Author's DNA journey of discovery

MERGING history with a dollop of mystery, bestselling Scottish author Sara Sheridan's novels delve into the past and often end with a spectacular twist in the tale.

But when it came to real life, the Edinburgh-born writer was fairly sure that her own family story was rooted quite clearly: Russian Jew on her mum's side, Irish Catholic on her dad's.

Now, though, a simple DNA test has blown apart fact from fiction. And the unexpected results of her own life story have left her with an even bigger mystery to solve - of exactly who she is and, more perplexing, how on earth she ended up here.

"I didn't anticipate the outcome at all," admits the author, whose DNA findings have just revealed she is actually an Oriental genetic rarity most probably descended from a captured slave from a tribe so unusual that finding them had left scientists scratching their heads for months.

The irony of being at the centre of a historical conundrum created by her own DNA is not lost on the writer. "My job as a historical novelist is usually to embellish facts like crazy to make a story," she smiles, "and now I'm finding myself having to strip everything back to try to get to the facts."

Her mother's family's Jewish faith led her to assume their origins were somewhere in the Middle East. Results from ScotlandsDNA, a research project which is compiling a genetic map of the nation, instead revealed she is one of a "vanishingly rare" female line that developed 17,000 years ago in the area around Sakhalin, Japan's most northerly island, and were eventually taken as slaves.

Incredibly, this new found real-life background has faint echoes of a story from one of her own novels, Secrets of the Sands, which tells how a young Abyssinian woman is forced into slavery.

The findings were revealed after 11 painstaking months of research which, according to Alistair Moffat, managing director of ScotlandsDNA, had scientists scratching their heads. "It's incredibly rare to see this," he says. "There is an amazing amount of diversity in Scotland's population and Sara's findings have just made it even more diverse. It really is surprising."

Her DNA revealed her distant ancestors were almost certainly part of the rare Ainu tribe, indigenous people who were primarily hunter gatherers with their own language, rituals and customs and who followed a form of religion based around nature.

Eventually trade with other countries led to the introduction of disease, claiming many of the tribe. Ainu women were captured and taken into slavery as the island fell into Russian control, while centuries of intermarriage and movement means the precise number of true Ainu is unknown. In the mid-19th century, there were only around 17,000 Ainu people left.

Sara was unaware of the ancient tribe when she took the DNA test last year. "My husband organised it as a birthday present last June, he'd heard about work to map Scotland's genetic heritage and how people were finding out how much of their background was Viking or Pictish. All that was right up my street," she explains.

She provided a saliva sample and expected to hear within a few weeks. "After three months when I chased my sample I was told that I was 'unusual' and that geneticists and historians were working on my case. My husband was joking with me, saying they'd discovered I was really a sea creature or a hobbit. I even thought that as it was taking so long I should ask for my money back."

In fact, scientists had hit a wall as they scoured the globe in a bid to match information contained in her mitochondrial DNA - the strand passed from mothers to their children.

"We get six billion letters of DNA - three billion from our mother, and three billion from our father," explains Alistair, whose organisation has now mapped more than 7000 different DNA samples. "Sara's DNA had what we called a Sakhalin marker, after the island where it's most commonly found."

Sara's search for more detail led her to online images of Ainu women and she was immediately struck by the physical similarities she shares. "One particular tribe was famed for physical features that endure in my family today - very thick hair and wide cheekbones. Somewhere along the slave route that runs along the southern border of Russia one of my female ancestors - likely a slave - whose mother and grandmother and great-grandmother might well have been raped and abused by men on the route - of many genetic persuasions - must have met a Jewish bloke.

"This history may not be that distant," she adds. "Russia abolished slavery in 1723 but serfdom continued until the 1860s, the decade incidentally when my own great-grandmother was born."

The DNA discovery has made the author keen to unravel her father's side of the family - a test that will have to be undertaken by a male member of her family. "I always thought that bagels and lox was my soul food but it turns out it's sushi. I had envisaged ancestors who had survived slavery in Egypt, not on the Steppes. It's made me realise how insubstantial are many of the stories we create about ourselves. It turns out that I not only write fiction but I am fiction too. My identity is more complex than I'd imagined."

Discover your DNA story. Visit www.scotlandsdna.com

 

'Immigrant' genetic make-up in every Scot

WE all carry six billion DNA letters, three billion from our mother, three billion from our father.

Fathers pass on Y chromosome DNA to their sons and mothers pass on mitochondrial DNA, or mtDNA, to their sons and daughters. But mtDNA dies with men and it survives only in the female line.

It means researchers can read two ancestral stories in men's DNA, one for their Y chromosome lineage and one for their mtDNA lineage. In women they can only read only their mtDNA story.

Tiny blips known as markers can appear which reveal fascinating detail about precisely where a person's ancestors came from and pinpoint when they lived there.

Unravelling the information means scouring DNA databases around the globe.

Britain has a rich and diverse genetic make-up drawn from across Europe, Asia and even Africa. Unpopulated until 11,000 years ago, it means every Scot has some kind of "immigrant" make-up.

 

Tom Conti has link to Napoleon Boneparte

AUTHOR Sara Sheridan has discovered her roots lie far away in the east, however DNA research among Scottish men has revealed ten per cent are directly descended from the Picts.

Researchers at Melrose-based ScotlandsDNA found a Y chromosome marker suggesting a large number of descendants of northern tribes known by the Romans as "picti" meaning "painted ones".

The fatherline marker, labelled R1b-s530, was found to be ten times more common in those tested who had Scottish grandfathers than those with English grandfathers.

The project has tested more than 7000 people, some from as far away as New Zealand and Australia, since it began 18 months ago.

The hope is to eventually draw up a "map" of Scotland's genetic make-up.

"Every result is interesting," says managing director Alistair Moffat.

"We are already finding that Scotland is incredibly diverse with more than 100 lineages already found.

"It turns out we are all very, very different.

"Because we are on the edge of beyond, people tended to move westwards and this was as far as they could go.

"We have found a lot of men descended from Berber and Tuareg tribesmen from the Sahara.

"But that just tends to throw up even more questions than it answers about how that has happened.

"We simply don't know.

"There is also a substantial group of women in Scotland originally from central Siberia."

More than one per cent of all Scottish men are descendents of the Maeatae, a Scots tribe whose historic homelands were near modern-day Stirling.

And Alistair's own DNA marker from his Hawick-born mother's side revealed Pakistan connections and English roots on his father's side.

When ScotlandsDNA tested Scots-Italian actor Tom Conti, the findings revealed the astonishing link with a relative of Napoleon Bonaparte, while an ancient ancestor of Scots radio presenter Fred MacAulay is thought to have been sold as a slave in Dublin in the ninth century and then brought over to the Hebrides.

The DNA of the Duke of Buccleuch was found to be an exact match of a descendant of Charles Stewart, who fought at the Battle of Culloden, with both men descended from a Breton aristocrat, whose family came to Britain in 1066 with William the Conqueror.

DNA research costs from £170, and the results are added to the genetic map of Scotland.

The test process involves a small saliva sample which is posted to ScotlandsDNA headquarters and then analysed.

 

Appeared Edinburgh Evening News May 2013

(c) 2013 Johnston Publishing Limited

Born to be a woman...Gina reflects on the fight for her life.

 

GINA Smith rummages in her cavernous black handbag and pulls out a sheet of yellowish paper.

She unfolds it slowly and deliberately, revelling in the impact she's creating.

Indeed, if someone was to film the scene, it would be no doubt accompanied by a dum-dum-DUM! soundtrack, there'd be audible gasps from the audience and a final round of applause.

The paper now unfolded and flattened on the table, is clearly a birth certificate. Gina, stubby nails painted deep blue, points proudly to the 'gender' column. Girl, it states.

"Girl," she says, puffed with delight. "It's written down there. Born a girl. Her Majesty's officials recognise I'm a woman, the department of Work and Pensions have done the same.

"I carry the papers with me because I won't take any crap from anyone any longer," she adds, stiffening.

"I have it all here in legal documents."

Gina, a former soldier and miner who worked in the dirt and claustrophobic bowels of Polkemmet pit, crosses her bare legs and adjusts her figure hugging frock. It has a vivid psychedelic print, cut low at the front and unfortunately just a bit on the short side so that when she bends over to take off her towering heels because they're hurting her feet, she gives a quick flash of her knickers.

Even if she realised, it's unlikely that she'd care. For having fought tooth and painted nail to get to the point where she can proudly wave that replacement birth certificate in any face she chooses, she's not about to worry about flashing some flesh.

Indeed, changing from a he to a she certainly wasn't without a fight. Back in 1994 when she was officially still male - even though the past life as Ian George Smith, father of four, one-time husband, soldier and miner, was very much no longer on the scene - Gina launched a one-woman campaign that highlighted the anguish of those like her, desperate for gender reassignment surgery but suddenly denied by a controversial health board rule. Her angry challenge made banner headlines. Gina, then in her late 30s, became something of a poster girl for those born in the wrong body, a bit of a pioneer at a time when sex swap surgery was still referred to in headlines as a "gender-bender op" and transsexuals were often cruelly dismissed as some kind of weirdos who needed to 'man up'.

Time moves on, attitudes change though, surely? Today, 18 years on since life and body changing surgery, it might be expected that we've all stopped snickering at the women who feel they really should be men and the men who yearn to be women, and learned to move on.

And yet earlier this month saw the launch of a new campaign aimed at dispelling transgender bigotry. Time for TEA (transgender education awareness) was developed by the Lesbian, Gay, Bisexual and Transgender National Youth Council, a unique project that will run in schools, colleges and universities.

As well as seeking to change attitudes among students, it will also target teachers, helping them understand the correct terminology and issues that transgender students might be experiencing.

That launch came just a few weeks after River Song, 18, who is in the process of switching from male to female, claimed she had been banned from the toilets and verbally abused by a member of staff at the St James Centre.

None of which really surprises Gina. After all, the piece of paper she feels she must constantly carry - a legal replacement for her original birth certificate granted post-surgery - proves that simply going through the process hasn't meant an end to her personal struggle.

"I didn't do anything that anyone else in my situation would not have done," she says, shrugging off suggestions that her high-profile mid-Nineties campaign was in any way brave or pioneering. "I suppose I'd fought so hard for so long - I'd got used to fighting. I didn't know what I was going to do with my life without the surgery, so I had to fight.

"Part of it has been me fighting against myself," she adds grimly. "I did all these very masculine jobs, like joining the army for seven years, working as a miner for two. But I couldn't shake the feelings that I had.

"Actually," she sighs, "I don't think you ever do get your head around it all. It's 'why me?', and 'why did life pick me for this to happen to?'."

Gina was the middle of five children growing up in the Midlands and knew from a young age that she was different. It wasn't a particularly pleasant childhood, she recalls. For a start there were her own conflicting feelings about her identity which arose just as younger siblings came along and she found herself suddenly squashed in the middle.

"People talk about middle child syndrome," she sighs. "Well I think it all helped to screw me up."

She craved attention and says she got it in the most shocking way possible. Years later she accused her father of sexually abusing her as a child, claims which he angrily refuted before he died and which, much to Gina's upset, never resulted in any court hearing.

A bit older and she began to attract attention from men, awakening feelings that she'd been told were wrong and which she battled against by taking on "macho" jobs. "I tried to fight it, I didn't want feminine feelings," she explains. "Every time I tried to get rid of the feelings they came back stronger.

"No-one can understand it because even I don't understand. Eventually I couldn't stand being two people at once, I thought I'd have to sort it out."

So she joined the Infantry in 1971 and served in the most butch places of all, Northern Ireland. Later as her regiment's Colonel's personal valet, she'd wait until he and his wife went on holiday and then raided the woman's extensive wardrobe, shedding his infantryman's uniform to prance around their home dressed in her finest Christian Dior cocktail frocks and heels.

Army life came to an abrupt halt in 1978. Tortured by her secret, Gina went awol in the most unlikeliest of places. "Jamaica!," she howls. "Of all the places to go awol, I did it on a small island and there was nowhere to go. Twenty-eight days in the slammer and then SNR - services no longer required."

Still desperate to prove her 'masculinity', Gina married, worked at Polkemmet pit and fathered four children. "It was extremely exhausting, " she remembers. "It was like I was acting all the time and I couldn't keep on doing it anymore."

Her marriage ended in 1988 and Gina slowly shed her masculine layers to become, on the outside at least, every inch a woman. Her children, still young at the time, had had no problem accepting her transformation, to them she became 'Aunty'. "You can't sit down with a four, six, eight-year-old or whatever and say 'sorry I'm not going to be your dad any more, they would have been devastated," she continues.

"I was fortunate that they have just always seen me the way I am and I'm unbelievably proud of them."

Sex swap surgery was not particularly new - high-profile personalities such as April Ashley had made the male-female transformation in the Sixties, and she went on to become a Vogue fashion model. But it wasn't much talked about either.

Gina, of Saughton, started hormone treatment and was days away from surgery in 1994 when health bosses decided to stop funding the GBP7000 gender-swap operations unless in "exceptional cases". Enraged, she loudly campaigned against their plans, eventually forcing a U-turn and undergoing full surgery in early 1995.

To prove how far she's come, she recalls a moment during the recent Fringe when she suddenly stepped on to a stage for an impromptu, first ever, stand-up comedy routine during which she fielded questions from the audience - some more intrusive than others - about being transsexual.

She enjoyed it so much that she's planning a much bigger, more formal show for next year's Fringe. "It'll be called 'Everything you ever wanted to ask a transsexual but were too scared to ask'," she giggles.

All a world away from the days when she desperately hid herself for fear of being found out, drank too much and thought of ending her life.

"You have to go through a lot alone and have guts and determination," she nods, "but I couldn't stand being the way I was any longer. I just want people to know I'm like any other woman."

 

 

Triggered by survey results, campaign sets out to increase understanding

 

A CAMPAIGN to highlight transgender issues was launched this month.

Developed by the Lesbian, Gay, Bisexual and Transgender National Youth Council, Time for TEA - transgender education awareness - is the first campaign of its kind in Scotland and will target older secondary school pupils, college and university students. It aims to work with teachers, helping increase under-standing of transgender issues. The campaign follows a LGBT Youth Scotland survey that revealed more than three quarters of transgender people had experienced bullying at school. Almost nine in ten said that bullying had a negative impact on their education. Fewer than half said they would feel confident reporting it. Nearly half of those who responded said they had left education as a result of bullying.

More details from www.lgbtyouth.org.uk

 

 

More than 80 years of ground-breakers

SURGEONS carried out the first recorded attempt at male-to-female reassignment surgery on Lili Elbe in Germany in 1930, who died three months after her fifth operation.

The first female-to-male surgery was in 1960s America.

April Ashley, pictured,

underwent surgery in 1960 and became a Vogue model and actress.

American tennis professional Renee Richards had male-to-female surgery in 1975. Despite opposition, she went on to play tennis on the women's professional circuit.

Former Second World War fighter pilot and racing driver Roberta Cowell underwent male-to-female surgery in 1951 - the first recorded case in the UK. The change meant she was barred from Grand Prix.

(c) 2013 Johnston Publishing Limited

The mail order doctor

Sitting at his desk in his Edinburgh study, Dr James Cullen laboured intensely over every single response, carefully instructing his long-
distance patients on what to do – cold baths and travel were particular favourite remedies – meticulously logging each patient’s correspondence and then copying one of his replies for his records.

Sealed and stamped, letters between doctor and patient winged their way – or, as this was the 18th century, they trotted along in horse-drawn carriages and bobbed over sea by boat – to places as far distant as Elgin and Manchester, Antwerp, 
Berlin and Madeira.
After all, Dr James Cullen was the most famous medicine man of his era, a mail order medic whose knowledge, advice and flair for communicating the mysteries and marvels of his profession had turned him into a global superstar.
And one who, for some of his despairing patients, must have been their final, maybe their only hope.

At his peak and at a time long 
before modern communication, the Edinburgh doctor was known around the English speaking world. Eventually, however, his fame dwi
ndled to within the walls of the Royal College of Physicians, Edinburgh (RCPE), where he was once president and where his portraits hang and items he once used – such as his pestle and mortar – are currently on show.
Now his fame in a fascinating and at times bizarre role as global mail order medic is being revisited in a Fringe production, using letters drawn from his own collection which not only reveal in absorbing detail the myriad of medical woes that afflicted his patients but his own, sometimes quite surprising, recommended cures.
“He became known as ‘The Doctor’,” says Iain Milne, Sibbald Librarian at the RCPE, where Dr Cullen’s letters are kept. “He was probably the most famous doctor in the English speaking world, so well known that people would simply address their letters to him as Dr Cullen, 
Edinburgh.
“What’s remarkable is that he wasn’t famous because he discovered anything in particular, but because he had this remarkable reputation that spread across countries. “
Patients hundreds of miles away would hang on his every word, taking advice for remedies – perhaps much to their relief he did not favour old-fashioned prescriptions involving things like snails, cobwebs, vipers and powdered skull – and accepting suggestions that they exercise, take cold baths and travel.
Among the letters that arrived at his Edinburgh study were some from patients with what seem to be very modern troubles. For in an age before vaccinations and antibiotics, when it might be expected that people’s health troubles would focus on how to survive everyday illnesses, many instead dwelt on issues like weight gain, stress and stomach ache. “The problem was that 18th century doctors couldn’t do much about things like infections or curing many diseases, they didn’t have the knowledge,” adds Iain. “So they tended to prescribe for the patient rather than the disease.”



People wrote seeking advice over fevers, colic, tumours and scabs. Some wanted help with toothache and worms, others for troubles with itches, nauseas, deleriums and 
ravings.
Some of the letters, viewed through modern eyes, can be amusing, Iain adds, others devastatingly poignant, oozing the writer’s misery for the plight they find themselves having to endure.
“One,” he explains, “from a man in Dumfries is a brilliant description of depression,” he explains. “Another letter from Perth was from a man suffering from venereal disease – who pleads for discretion – who is given a very long and complicated 
prescription.
“Jane Webster from Yorkshire wrote to him very concerned about her weight,” adds Iain. “There’s one long letter from her wondering what her weight should be for her height, she says she is a ‘44-year-old with dark hair, dark complexion and warm temper’ but had begun to grow fat before she was 20.
“She talks of having a father who was also very ‘corpulent’, and tells how she was 18st 2lb but had reduced her weight,” he adds. “She writes to him to ask what she should do, and his reply is that she ‘persist in present measures’.
“He also suggests she take great bodily exercise and cold bathing.”
Indeed, cold bathing features in many replies, adds Mr Milne, who presents part of the Fringe show, in which a selection of letters and Dr Cullen’s responses are shared with the audience.
“He often suggests people travel because he thinks that is good for them and also so they can take the waters at various spas.
“He suggests travelling to Germany for some patients and cold bathing in Peterhead during winter for others.”
He meticulously detailed what his patients should do while travelling, even down to choice of clothing, vehicle, where to sit on the coach and which windows to open.
Letters arrived daily and Dr 
Cullen, having risen every morning at 6.45am, would spend around two hours composing his responses before visiting his Edinburgh patients.
Incredibly, he would copy out his response – word for word – to create a full medical record of his patients’ troubles, eventually in 1781 opting to use an early copy machine designed by his friend, James Watt.
“One patient’s letter was 12 pages long and describes everything about diet and environment, the weather – if it’s cold or windy – and wonders what impact it has on their health,” adds Iain.



“There were a lot of people who’d write with stomach pains. One from Aberdeen suffered from an excess of bile and writes to Cullen detailing all the things he’s taking for it – it’s an extraordinary letter – and Cullen writes back saying he’s worried about him taking too many medicines.”
In return, his patients would part with two guineas for each consultation – around £250 by today’s standards, not only making Dr Cullen a world famous doctor, but quite a wealthy one too.
His fame, explains Iain, was the result of his fine reputation as a medical lecturer, his status at the head of the RCPE in a city recognised globally as a centre of excellence for 
medicine.
“It was during the Enlightenment, the Edinburgh medical school was at its height, and he was one of its leading professors,” he adds. “He wrote two very important textbooks – one, First Lines in Practise of Physique, was a hugely successful medical textbook at a time when lots of people were learning medicine.
“And he must have been a fantastic teacher. He was certainly very 
famous.”
Dear Doctor, with Professor David Purdie, College Librarian Iain Milne and actress Elayne Sharling, is at the Royal College of Physicians, Edinburgh, until Saturday. Tickets £8 (£6).
Appeared Edinburgh Evening News, 7 August 2012.
Scotsman Publications.

PEOPLE: Olivia's Mission to help amputees stand tall

TEN years had gone by since the young man with the dazzling smile was last able to raise himself up. Yet now here he was, although a bit wobbly, standing tall.

He'd travelled 8km over dusty dry roads, dodging potholes and rocks in his battered wheelchair to get there. He was 34 years old and since the road accident a decade earlier tore both his legs off at mid-thigh, he'd married, become a father and dreamed of this day when he might just possibly stand straight again.

Olivia Giles watched the joy spread over his face as the new artificial limbs which were about to change his life in the most dramatic manner imaginable, were finally fitted.

"The look on his face was amazing," she recalls. "To see him standing up for the first time in ten years and to think that it had only cost us a small amount of money to do it, was incredible."

If anyone could empathise with how he was feeling, it was her. In February 2002, she left her job as a senior partner at a city solicitors' firm early, feeling like she was coming down with the flu.

In fact, she had life-threatening meningococcal septicaemia.

She woke in hospital a month later to discover both lower arms and her legs below the knee had been amputated in a desperate measure to save her life.

Seven years on, and thousands of miles and a gulf of differences separate her from David in his simple Zambian home. But just like him, she too walks tall on artificial limbs. And both know that without them, their lives would be so much harder.

"I remember myself standing up for the first time," she explains.

"I had been lying down for six months and finally there was this feeling of being upright and people at last seeing what height you are. The difference this piece of metal and plastic can make is the same for him and me: it's the difference of whether you have a life or not.

"It's the difference in getting from A to B by yourself, of having the independence of being able to stand up.

"That's such a 'human' thing, to be able to stand up and look someone in the eye."

Olivia is a striking blonde with a generous smile and razor sharp lawyer's mind which she has turned to helping Africa's neglected amputees like David through three projects - two in Zambia, one in Malawi - run by her Edinburgh-based charity, 500 Miles. Yet determined and persuasive as she is, even she is slightly ruffled by her latest and ambitious fundraising drive, Miles for Smiles.

In a fortnight's time, hundreds of walkers will set off a minute apart for a one-mile walk around the city's Festival Square area. The event is timed to last exactly 500 minutes and her dream is that every minute slot can be filled, so by the end of the day walkers will have covered the 500 miles - a reflection of her charity's name.

"I want it to be fantastic, but right now I'm just hoping people actually turn up. How many miles do you think I can ask my mum to do?" the 43-year-old laughs.

She may be worrying unnecessarily. For she's already signed up familiar faces like The Proclaimers - whose most famous song inspired her charity's name - along with television hosts, sports stars, entertainers and a string of others who have promised to be there on the day.

Like most that she meets, they've been hooked by her passionate explanation of the life-changing impact her charity can bring to lives dealt the double blow of crushing poverty and the misery of disability.

It's not easy to say no to someone as driven as Olivia Giles.

She had already helped front a successful meningitis awareness campaign when she decided to concentrate her efforts on an area that reflected more of her life now.

"My feeling was that amputees and disabled people with mobility difficulties are pretty well served in this country," she explains.

"I was aware that if I lived in another country, then it would not be quite like that."

Olivia, who uses artificial limbs to walk, arrived in Blantyre, Malawi, in January last year, to see its sole orthopaedic workshop and assess how she could help. The experience left her reeling.

"I was a total novice," she reflects. "Nothing prepares you for being there.

"There are so many demands, serious things like HIV, malnutrition, infant mortality," she explains.

"Rehabilitation for amputees is a really low priority."

The workshop survived on just GBP 1,800 a year and was producing only 200-250 devices for a nation with around 60,000 amputees.

"And the level of corruption was blatant and appalling," she adds.

Worse was the sight of pitifully poor people whose lives could be dramatically improved for an investment of just GBP 60, enough to buy them an artificial limb or support.

"You cannot have a life in a wheelchair over there," she says quietly.

"You can't join in socially if you can't walk. The quality of life is so low. Being able to move about is life-transforming."

She returned home depressed and unsure of where to start until a chance meeting with a charity worker from Glasgow with links to Malawi. They offered to provide old seagoing containers to create an orthopaedic workshop at the capital of Lilongwe. It opened, finally, at Easter after long negotiations with the Malawi government over how she could fund its future.

In its first week alone it made 65 devices and helped 43 patients. Soon people were travelling miles, dragging themselves along potted roads to get a life-changing artificial limb.

With the Malawi workshop spinning along, Olivia headed to neighbouring Zambia to strike a deal to fund staff training and boost output at an existing prosthetics workshop.

There she stumbled across an air medical service delivering vital orthopaedic help to isolated areas of the country which had just lost its sole source of funding.

Supporting FlySpec is now a vital area of her charity's work. Raising the funds - her charity relies totally on donations - is a challenge. But it's one that Olivia found she couldn't ignore.

She speaks movingly of a 16-year-old boy who she watched one day as he played football near to the Malawi workshop.

"He had trouble written all over his face," she laughs. "He was boisterous, he was having a great time. It was a surprise when I later found out that he had two below-the-knee prosthetic limbs that we had provided.

"It was fantastic to see the second chance at life these limbs had given him. Two pieces of metal, some plastic. That's all it is, a cheap fix that changes lives."

She adds: "I feel a sense of obligation that this is there to be done. If I don't do it, how do I live with myself? I've seen the need. If I don't do it how do I sleep at night?" she shrugs.

"Some things have your name on it."

A MILE IN YOUR SHOES

MILES for Smiles takes place on 3 October, when walkers will set off a minute apart between 11:20am and 7:30pm, covering a mile course around Festival Square.

It's hoped that each time slot can be filled - walkers must register beforehand - making a total of 500 miles walked.

Walkers can share their mile with friends and family, walk together in groups or even do their mile over and over again.

They'll be accompanied by music from bands, pipers and entertainers - and might even find themselves following in the footsteps of some celebrity faces.

To add to the fun, walkers are encouraged to complete their mile in unusual ways - in fancy dress, dancing the route, or in any quirky way they fancy.

There's no need to raise sponsorship to enter, but anything made will go to help projects run by 500 Miles.

Registration is easy and free. Simply go to www.milesfor smiles09.co.uk, e-mail your details to trish@500miles.co.uk or write to 500 miles, Box 500, 44-46 Morningside Road, Edinburgh EH10 4BF.

You can support the event by donating online at: www.justgiving.com/fivehundredmiles


Edinburgh Evening News September 18, 2009

STAYIN' ALIVE... Hopefully....

HEALTH stories serve many purposes. They bring human drama to life, certainly, but they also help highlight sometimes unusual conditions or show inspirational courage or achievement in the face of often dire prognosis.
Newspaper articles on some illnesses might even help save lives - I've interviewed many people who have realised they should at the very least consult a doctor after having read something in a newspaper that's made them wonder about their own health.
Some are heartbreaking. But most show the incredible fortitude that people typically display when the going gets tough. What follows below are a few of the health stories that took up some of my time in the latter half of 2011.

HEALTH: THROUGH SICKNESS AND HEALTH

THE wedding vows said it all. As bride and groom Kate and Roy Iwaniec promised to be true to each other in sickness and in health, "till death us do part", their pledge held a particularly poignant twist.

For as they exchanged rings, both were only too aware that this was a marriage ceremony that very nearly never was.

And had fate dealt them both just a slightly different blow, there would never have been any Mr and Mrs Iwaniec at all.

Today the Bonnyrigg couple are still fresh from their October wedding, looking forward to their first Christmas together as husband and wife.

But this time last year, Roy was battling to recover from a road accident that nearly killed him - remarkably, his second brush with death following a near-fatal heart attack years earlier. And while Kate tirelessly nursed him and tended to his every need, she was completely unaware that she, too, was about to confront very her own near-death experience.

Roy had astonished doctors with an amazing recovery from a horrendous brain injury, learning to walk and talk against all the odds, when a chance discovery revealed that Kate's niggling and frustrating medical problem was, in fact, life-threatening cervical cancer.

The horrendous chain of events would have tested any couple's relationship and resolve to the limit. Instead, confronted by the darkest of days that left both wondering what the future might possibly hold, Kate and Roy drew closer together than ever before.

And, after a relationship spanning 11 years together as a couple, they finally agreed to get married.

"It must have been the bang on the head that did it," laughs Roy, 51. "But I woke up from 11 days in a coma after the accident and realised what's important in life.

"I knew right away that, whatever else happened, I had to ask Kate to marry me."

The couple had been enjoying a night out in Dalkeith in October last year when Roy decided to nip out of the club they were in to pick up a takeaway. Somehow - he has never found out precisely how - he ended up quarter of a mile away from the Indian restaurant, on a busy stretch of road near Melville Golf Centre.

"I have absolutely no idea what I was doing there," he says. "I'd been out, I'd had a couple of pints, I wasn't drunk but I wasn't sober either. It was Sunday, October 24, the first Old Firm game of the season and Rangers won 3-1. That's the only vivid memory I have."

Later he discovered the car that hit him had propelled him 12 feet up in the air. He flew eight feet before smashing his head into a wall.

He woke up 11 days later from an induced coma to find himself in the Western General's high dependency unit surrounded by tubes and beeping machines. He had a broken bone in his neck, bleeding in his brain, broken ribs and Kate - frantic with worry - was holding vigil by his side.

"I was pulling at all the tubes, trying to rip them out," he recalls. "I didn't know what was happening. The nurses had to hold my hands down, I was so determined to get the tubes that were keeping me alive, out.

"There were two weird metal bolts sticking out of my head too," he says. "I felt like a Dalek with these things sticking out."

Medics had bored two holes in either side of Roy's head to help relieve the bleeding around his brain, caused when his skull smashed into the wall.

"Doctors said he'd broken what's called the C2 bone in his neck," remembers Kate. "We were told that he was incredibly lucky, a fraction of an inch away from being paralysed."

For Roy it was a second near-death nightmare. Eleven years earlier a blood clot in an artery in his heart caused a massive heart attack. "I was pretty much dead," he says. "The doctors had to inject adrenalin straight into my heart to bring me back.

"You can't go through all of that and not start thinking about what is really important in life."

In spite of his injuries from the road accident, Roy, a driving instructor at the time, made a remarkable physical recovery. Within a month he had proposed to Kate and the couple set a date for their wedding in May.

"I call her my 'Ground Bound Angel'," he smiles. "She's been with me through thick and thin and I couldn't manage without her.

"I never really found out much about the accident. It was just one of those things. The driver stopped at the scene and wasn't charged with having done anything wrong, but to be honest I didn't really want to know too much about it - I was too busy trying to get better.

"The worst thing has been having to learn to walk again, that wasn't something I expected to do in my fifties, and having other adults having to take care of all my personal hygiene.

"I remember standing up for the first time in hospital supported by a giant zimmer frame, wearing some kind of nappy, wondering if I could walk. It was awful.

"Even now that I'm physically much better, my brain injury still causes problems.

"I had to learn how to write again. And I get frustrated easily and if two people are talking to me at once I feel like my head is going to explode."

There are mood swings and periods of depression too, including sleepless nights when Roy admits he was often too frightened to close his eyes in case he never woke up again.

But he found vital support from brain injury organisation Headway at Astley Ainslie hospital, where he met other brain injury patients and took comfort from seeing their progress.

As his condition improved, the couple looked forward to finally tying the knot. But their plans were suddenly and dramatically thrown into chaos.

A chance remark to a doctor led to Kate, who works as a cleaner at Dalkeith Police Station and at Kings Park Primary School, undergoing tests which revealed devastating news that she had cervical cancer.

"I'd been so busy looking after Roy," she remembers, "it was like having a baby in the house, I had to do everything for him, from cutting his toenails to helping him wash.

"I wasn't thinking too much about my own health but I'd noticed every month I had irregular bleeding.

"I was referred to hospital and was told I was anaemic and had fibroids, growths in the womb which weren't cancerous. When I went back I happened to mention I had a bit of pain and the doctor thought it might be best to have a biopsy.

"I thought maybe it was something like polyps. I went back to get the results and two nurses were in the room and I just knew it was something serious.

"When they told me it was cancer, my first reaction was it couldn't be because I was due to get married in seven weeks."

The couple's May wedding was rearranged for June only to be cancelled again as Kate recovered from a hysterectomy.

Eventually Roy and Kate, who live at Adam Kelly View, Bonnyrigg, made it third time lucky in October - almost a year to the day from Roy's accident - when they tied the knot at Dalkeith Registrar's Office.

"We had a great day and a wonderful honeymoon in Malta," says Roy, who is now hoping to return to his role as a Trainer and Assessor for St Andrew's First Aid.

"You look back on it all and wonder how on earth we got through it," says Kate, 54. "We're just very lucky that things have worked out the way they have.

"It might have been very different."

Support and therapy ofr those suffering brain trauma

HEAD injury as the result of an accident is the most common cause of sudden trauma to the brain in adults.

But while some can be left with obvious signs of brain damage that impacts on their physical abilities, others, like Roy Iwaniec, have more subtle symptoms such as short-term memory loss, sudden mood swings and difficulties with every day issues like problem solving and crowded places.

Edinburgh Headway Group based at Astley Ainslie Hospital provides a meeting place for people coping with brain trauma, offering support, advice and facilities to aid their recovery such as a gym, computer games, art and music therapy, reflexology and social activities.

"It's been amazing," says Roy. "I can go there and talk to people who know what I'm going through. I look around and see some of the people there and realise how lucky I've been - I could have been left so much worse."

The charity has its own premises within the hospital grounds.

For details, contact 0131 537 9116, e-mail office@edinburghheadway.org.uk or visit www.edinburghheadway.org.uk.


Edinburgh Evening News 14 December 2011

HEALTH: SIMPLE TESTS COULD SAVE LIVES

THE early morning rap on the door and the police car parked in the street outside. As she went downstairs, Natalie Cutler realised on that bleak early January morning that something awful must have happened.

"I just knew," says Natalie, sadly. "I heard the bang on the door. It was 4am. I came downstairs. There were two police officers. I didn't want to hear what they'd come to say. I didn't want them to tell me which one it was."

Her first thought was that something must have happened to one of her three strapping sons. Tragically, she was right.

"One of them said, 'Natalie Cutler, do you have a son called Stuart?'," she recalls. "It was awful . . . just awful."

Natalie pauses, takes a deep breath and remembers through falling tears the nightmare of learning how Stuart, 22 years old, fit, apparently healthy and just weeks earlier the life and soul of the family's Christmas celebrations, was one minute in the kitchen getting a glass of water, and the next, dead.

"We were told he was probably dead before he hit the floor," explains Natalie, 52. "It didn't matter that the ambulance was at the house within eight minutes and that they spent 20 minutes trying to revive him. He was already gone."

There was, the family later learned, nothing that anyone there at the time could have possibly done. His heart had simply stopped. Yet had Stuart - one of at least 12 young people to die in similar circumstances every week - undergone two simple, non-invasive checks, then perhaps his early death could have been avoided.

It's why today Natalie and a group of families from around Scotland who have also been left to cope with the shock of losing loved ones, will head to the Scottish Parliament to launch a fresh appeal for every young person in the country to undergo heart screening.

At the root of the campaign, led by charity CRY (Cardiac Risk in the Young) will be a powerful postcard featuring the faces of 12 young Scots - among them Stuart - each one of them cut down by a previously undetected yet often preventable heart condition.

Sadly, points out Natalie, each poignant portrait represents what seems to be a growing and tragic problem. For the number of young people who lose their lives to sudden cardiac death - often described as Sudden Adult Death Syndrome (SADS) - has leapt 50 per cent from previous estimates.

For most - around 80 per cent - there will have been no warning, no previous symptoms and no hope of surviving.

"It's awful to think that there are around 16,500 young people in Scotland walking around right now with an undiagnosed heart condition. Some might die tomorrow or next week, next year," adds Natalie, a project manager for a telecoms company. "And what's also really shocking is that the equipment is there that can help save their lives. It just isn't being used."

It was January 17, 2009, just weeks after Stuart had travelled home to Mid Calder from Cheshire where he had set up home with his girlfriend. "It was lovely to have him home," recalls Natalie, 52. "I got to be 'mummy' again and I loved it."

Stuart had been sitting at home watching a movie with girlfriend Becky, the couple's cat snoozing on his knee, when he complained of slight palpitations. "He told Becky he had this strange feeling," Natalie recalls. "He felt his heart racing."

While Stuart's girlfriend went to call her mum to ask for advice, he walked to the kitchen to get a glass of water. She heard the glass smash. He'd collapsed. When she rushed through she thought he'd passed out and phoned 999. It turned out he was already dead before he hit the floor.

The family was later told Stuart had an enlarged heart, a treatable condition which he had either been born with or had developed as a youngster.

While Natalie and husband David, 58, wrestled with their grief, there was also panic that their two others sons, Michael, 30 and Richard, 27, might also be affected. The brothers underwent emergency tests.Luckily, both were clear.

"But for Stuart, it was a ticking time bomb in his chest," she adds. "It's terrible to think that he died of an undiagnosed heart condition which, had it been found earlier, then something could have been done."

That's the case in 90 per cent of sudden cardiac death cases, and the reason why CRY is relaunching its original 2007 appealing for a national heart screening programme for young people. Back then its hard-hitting poster featured eight young people's portraits to represent the number of deaths each week from previously undiagnosed cardiac conditions. But new figures - perhaps the result of greater awareness and post-mortem tests - show the number of cases every week is closer to 12.

CRY'S chief executive, Alison Cox, says: "As the recorded incidence of sudden cardiac death rises it is timely for us to return to Scotland to re-launch this powerful campaign as a way of emphasising the importance of screening.

"These 12 faces are just a snapshot of the problem. We need to keep up the pressure and engage support from as many MSPs and MPs as possible to ensure we are doing everything we can to prevent other families from experiencing similar tragedies."

CRY wants the Scottish Government to extend an existing cardiac screening programme, which provides ECG and echocardiograph tests for elite athletes. It was launched in 2008 following the death from heart failure of Motherwell FC captain Phil O'Donnell, 35.

Natalie adds: "An ECG takes just 20 minutes and an echocardiograph about the same. So 40 minutes of testing on equipment that's already there could help save so many lives. It's just awful when you know a simple test could be all that's needed."

n For more information about CRY, go to www.c-r-y.org.uk

Edinburgh Evening News December 1, 2011

HEALTH: VISION FOR THE FUTURE

TO some, it probably sounds like something from science fiction. To others, the notion that one day soon medics will be able to give the blind back their sight is just wishful thinking.

Certainly to the group of specialist medics who gathered at a meeting room at Edinburgh's Royal Infirmary 100 years ago to launch an organisation aimed at harnessing expertise on eye disorders and treatments, the idea of growing replacement body cells from dead donors to repair damaged eyes could only be straight from the pages of an HG Wells novel or, indeed, Mary Shelley's Frankenstein.

Rather than dabble with such fantasy, the new members of the fledgling Scottish Opthalmological Club were far more concerned with new instruments that might enable them to look deep within the eye, and how to tackle infections caused by the scourge of TB and syphilis.

Now, however, a century since the exclusive club held its inaugural meeting in the Capital, modern medical science in Edinburgh is on the verge of a major breakthrough, one that could offer hope to millions.

Soon the first patient in a revolutionary clinical trial aimed at reversing corneal blindness will undergo treatment using material from adult donor stem cells that have been harvested after death and grown in Scottish National Blood Transfusion laboratories.

If the trial is successful, stem cell treatment could bring sight to millions around the world whose lives have been plunged into darkness.

Treatment on such an enormous scale is certainly a far cry from what was on offer at the start of the 20th century when a handful of ophthalmologists from around the country met to share their revolutionary findings in the hope of improving the quality of care for their patients.

Their work is now being marked in a new exhibition in Surgeons' Hall Museum in Nicolson Street - a timely reflection on how their generation helped pave the way towards a modern era that could well lead to the blind being given the chance to see again. Yet, as Professor Bal Dhillon of the Princess Alexandra Eye Pavilion admits, anyone even suggesting the use of cells from dead donors, grown in a lab then transplanted into patients' unseeing eyes back in 1911 may well have found themselves introduced to another area of medical care - the asylum.

"There is work going on now which back then would have been seen as science fiction," agrees Professor Dhillon, whose team hope to carry out the first corneal stem cell surgery on a trial patient within months. "We have a number of stem cell programmes and genetic research going on now which in 1911 would certainly never have been dreamed of."

At the forefront of his work is the astonishing technical advance that means limbal cells can be harvested - with consent from deceased adult donors - a process far less controversial than stem cells removed from embryos. The cells are then grown in the lab and later injected into patients' eyes to replace diseased corneal cells and to restore sight.

The trials were first suggested two years ago, but have been delayed while the Scottish Blood Transfusion Service laboratory waited for approval from the Medicines and Healthcare products Regulatory Agency (MHRA) to carry out the work. The lab is understood to be one of the first to hold such a licence.

"The lab side of things has just come to fruition and we are hoping to start first patient treatments later this year," confirms Professor Dhillon. "Getting to this stage has been a major challenge."

The go-ahead could have global ramifications. Corneal diseases are second only to cataracts as the major cause of blindness and around 20 million people are thought to be affected. And while corneal blindness can be treated using transplants or tissue grafts, both carry a high risk of infection. On top of that a shortage of human corneal donors means only a small number can ever hope for treatment.

But while Professor Dhillon and his Chalmers Street-based team prepare for their ground-breaking trial, the medics who gathered in 1911 had equally dramatic advances to debate.

Their profession was at a unique point in its history. Indeed it was a year that would become a turning point in eye treatment.

"It was the year an ophthalmologist won the Nobel Prize, Allvar Gullstrand was the only one to do so," recalls Professor Dhillon. "He won it for developing an understanding of the physics of how the eye works.

"But it was also the year that the slip lamp microscope was introduced which allowed very good detailed description of what goes on in the eye. Until then, we didn't really understand why certain diseases produced certain problems."

It was against that rapidly evolving background that a group of Edinburgh-based opthalmologists formed the Scottish Opthalmologists Club (SOC). Among them was world renowned expert Harry Traquair, whose work on visual field testing - which determines the extent of a patient's side vision - formed the basis of eye tests to establish glaucoma. Back then they also faced problems which, thanks to antibiotics and modern medicines, are now relatively rare.

"In 1911, infections were a big problem. TB and syphilis were common and can cause eye infections," explains Professor Dhillon, who is a member of the SOC. "There were a lot of infections that carried people off at an early age which we now have treatment for.

"On the other hand, HIV wasn't around then. It affects the immune system and so leaves the patients susceptible to eye infections."

A key area of modern research at the Eye Pavilion looks into macular degeneration - a condition that in 1911 was put down to old age. "Macular degeneration is often under-diagnosed and is a major cause of older people becoming registered blind," says Professor Dhillon. "What is concerning now though is that we are seeing people in their early 50s with it, so we want to find out what is causing that."

Research has found some people have a genetic disposition to it while others have a natural protection against the condition.

"There are two types of macular degeneration, wet and dry. Wet is rapid and takes away vision fairly quickly unless picked up. Macular degeneration produces leaky blood vessels, but it can be treated with injections into the eye to reduce the condition's progress.

"If you can understand why it happens and where genes have susceptibility, you can tailor treatments to target those problems. In 1911 that would be like science fiction."

As would treatments and monitoring programmes that help identify patients at risk from diabetic retinopathy, known in 1911 but which had no effective treatment.

But Prof Dhillon warns the rapid advances of the past century might not be matched in the next unless vital funding for research is found. "Funding is becoming increasingly difficult to come by. Cancer and heart disease are major priorities of course, but good quality of life is important too. How would we manage if we couldn't see? The answer is that we couldn't or life would be such a struggle, and there'd be extra costs looking after people, a loss of independence and a loss of the joy of living.

"There is a need to carry forward the work of the past century into the next 100 years."

Looking back

Some surgeons took special interest in eye conditions in the late 1700s as soldiers and sailors returning home from the wars against France were suffering infections that led to loss of vision.

Some surgeons took special interest in eye conditions in the late 1700s as soldiers and sailors returning home from the wars against France were suffering infections that led to loss of vision.

Early treatment was harsh. Blood-letting, which involved scarring of the eyelids, was believed to help improve circulation but often simply led to death.

One surgeon, John Taylor, became known as a coucher or cataract surgeon, but his dubious method of breaking up cataracts in the eye often caused more harm than good. He later confessed to blinding hundreds of patients and was accused of accelerating blindness in composers George Bach and Johan Sebastian Bach.

By 1822 the Capital had its own Edinburgh Eye Dispensary followed by an Eye Infirmary (there was another in Dalkeith) to cater for miners.

The city's first ophthalmic surgeon was appointed in 1855. William Walker became oculist to Queen Victoria.

Photography and retinal cameras help transform eye treatment by enabling specialists to see inside the eye.

n Sight for Scotland: 100 years of ophthalmology, is at Surgeons' Hall Museum, Nicolson Street.


Edinburgh Evening News September 14,2011

HEALTH: GLAD I SAID YES TO REHAB

STINKING in clothes he'd worn for days on end, Peter Creamer slowly woke up, eyes focusing on the field around him that he used for a bed and then on the slobbering dog that was licking his face.

Bleary-eyed, tongue stuck to the roof of his mouth, there was just one thought on his mind: where was his next can of cider?

In his pocket was a wad of cash - GBP7500 to be precise - left over from selling his home and certainly plenty to help him find a place to sleep, to scrub up and leave behind this sodden patch of field he'd chosen for a bed.

"But I didn't want to spend my money on a hotel or a bed and breakfast," says Peter, recalling the point when the need for drink overwhelmed any remaining rational thought. "I wanted to use that to buy drink."

Today, Peter, 46, is casual and tidy in his brightly striped polo shirt, smart shoes and jeans. He's feeling good, he grins, miles better than he has felt since he was just 13 years old - the last time he was properly sober.

For more than 30 years he careered through life on self-destruct mode: decades of inflicting horrendous damage on himself, stumbling through one day to the next blindly drunk, usually incoherent and sometimes disturbingly aggressive, with two broken marriages and more blackouts than he could ever remember behind him.

Life was chaotic and depressing. It was hardly surprising he almost died more than once - ill health caused by drink was bad enough, but three times despair overwhelmed and he tried to take his own life.

During infrequent moments of clarity, seeking help was never an option. His only escape from alcohol's rock-hard grip, he believed, was death.

"Sometimes you have to go through the really bad bits to see how low you've become," he explains quietly. "For a long time I didn't even think I had a problem. The thing is, you have to want to be helped."

That's a sentiment that has been expressed many times in connection with events surrounding singer Amy Winehouse's sudden death. While toxicology reports are not yet known, put the 27-year-old's well-publicised battle with drink and drugs together with an infamous reluctance to embrace rehab expressed in her number one song and it's easy to conclude that addiction probably cost her her young life.

Certainly her loss has focused attention on rehab services. Her father, Mitch, raised the issue at government level and announced the launch of the Amy Winehouse Foundation, which will eventually provide rehab services for families who would otherwise struggle to find funds to send addicted young people for treatment.

Nothing like that was available to Peter in his youth. At least now, he's found help to turn his life around.

He's rightly proud to say he's been sober for 13 months, the result of attending Leap (Lothians and Edinburgh Abstinence Programme), an NHS Lothian project run behind the grand frontage of a Stockbridge Victorian mansion, where drink and drug addicts battle to beat their demons with impressive success rates.

It's here that Peter and so far about 200 other addicts confronted their illness, took it on and, hopefully, have managed to beat it.

It means that Winehouse's loss at an early age touches a nerve. "I was around 20, still early in my 'drinking career' and I started to look at how much I was drinking," says Peter. "I asked my mum did she think I was an alcoholic and she said, 'no son, you're just someone who likes a drink'.

"I did try to set boundaries for myself, so I suppose I knew something wasn't right. I wouldn't go to the pub straight from work or, if I did, I'd go home early, but I was just fooling myself because I would still get drunk."

If help had been there then, it is likely he still wouldn't have embraced it. Drink flowed through his veins since his first courage-boosting tipple before a school dance at 13. A few half-hearted detoxes and some Alcoholics Anonymous meetings aside, it rarely left his system until last autumn.

In between were horrendous episodes. The two cans of cider for breakfast before heading to work, coming home plastered. Drink got him in trouble, it made him aggressive and suicidal. He eventually lost his job when his bosses decided they couldn't risk him driving the work van filled with passengers in case he decided to end it there and smash it into a bus.

There were two marriages followed fairly swiftly by two grim divorces as his desperate need to drink himself into oblivion wiped out any hope of a steady relationship.

"My second marriage ended after ten months," he says. "I'd got married partly because I was seeking some kind of purpose in my life. My wife was teetotal but I was stinking drunk all the time.

"I'd no job, so I'd wait till she went to work and I'd get drunk. I did nothing around the house, never even made her any dinner. She went on holiday once and I was delighted because I could drink and not get nagged. Drinking in the house was better than the pub - if you fell over it was usually just from the couch on to the floor so you didn't get hurt.

"I'd throw whisky bottles in the neighbours' gardens, thinking no-one would know I was drinking them."

Betty, 45, can relate to the deception and denial that often goes hand in hand with being an alcoholic. Another successful graduate of the NHS Lothian Leap programme, her addiction was rooted in the "harmless" post-work glass of wine that eventually evolved into a habit.

"I'd hide bottles around the house," she confesses. "I'd nip upstairs, saying I was going to the toilet and come back down drunk.

"People asked if I'd been drinking and I'd lie and say 'no'. They'd say 'you need help' but I turned it down. I didn't think my drinking was anyone else's business and I didn't think I had a problem."

Drink eclipsed everything in her life. Her self-esteem and feeling of self-worth plummeted, she stopped looking after herself and focused attention instead on hiding bottles of vodka around the house.

She stopped working and the drinking progressed. It didn't make her feel better, in fact it went hand in hand with low self-esteem and rock bottom self-worth.

There were spells in hospital as her health failed and at least one suicide attempt. She'd detox in hospital, leave and within days be drinking again.

When she eventually accepted help, it was, she adds, "to get other people off my back".

Her refusal to accept the scale of her problem meant her first episode at Leap was not wholly successful. Required by the counsellors at Leap to be honest and open about her relationship with alcohol, her thoughts, feeling and behaviour, Betty - who doesn't want to be fully identified - struggled.

"I was in denial," she explains. "I didn't embrace the treatment. I went through it, came out and said I wouldn't drink again. And then I did."

Like Peter, she needed to hit that dire personal low to jolt her into taking what was probably life-saving action. When it came, it lasted ten long horrible months.

"I was drunk constantly. Things were very much out of control, really bad. I had a ten-month blackout. I can remember very little of it. I wasn't aware of anything, I couldn't see what I was doing to myself and the people around me.

"But I now know I had to go through that to get here. I look back and think 'what a sad person'. And I feel very sad when I see it happen to other people."

Betty's GP referred her back to Leap last September. This time she hasn't touched a drink since.

About 60 per cent of people who have passed through the community-based residential programme, based in Malta Terrace, have gone on to successful recovery. Launched four years ago, the service involves three months of counselling, detox for those who require it, peer group support and intensive aftercare.

For Peter, from Boghall, a drink-free life means he can at last focus on a new home and the possibility of a job working in the care sector. "I used to think all I had to look forward to was dying," he says. "Once I was in hospital with pneumonia. It developed into a blood clot on my lung and I remember thinking that was a huge bonus, it was my 'get out' clot, my trump card. Here was something that could kill me because the drink was taking too long.

"I'd had enough of living. I wanted to die," he adds. "Now, though, I'm looking forward to life."

Moving forward

LEAP (Lothians and Edinburgh Abstinence Programme) was launched four years ago and is the first programme of its kind to combine NHS Lothian services with Edinburgh City Council, job-related organisation and other alcohol and drug partnerships.

Twenty addicts at a time use its seven-day-a-week service, with six out of ten going on to "graduate", giving them a route to housing, further education, training or work.

Eddy Conroy, Leap head therapist, says: "Staff are able to observe the physical, mental and spiritual transformation that takes place in patients over the 12 weeks of treatment.

"We see the shift from active addiction to recovery every day and it never ceases to affirm the fact that recovery is not only a possibility but a tangible reality for those in active addiction who are willing to work hard to find a healthier life."


Edinburgh Evening News 5 August 2011

HEALTH: HELP ME SOLVE MYSTERY OF MAUREEN'S ILLNESS

PERCHED at the top of a steep staircase where it commanded a prime view across the hub of Tollcross, Goldbergs was an affordable store for Edinburgh shoppers with discerning tastes.

Within its glass-fronted five storeys was high fashion for the young woman about town and sensible outfits for the more mature. There was china and household essentials, menswear, children's clothes and a pleasant rooftop cafe with views across the town.

For seven years, Maureen Wood worked hard both on the shopfloor and behind the scenes. Pretty and vivacious, she loved music, adored showing off her trim legs in her favourite short skirts and had a natural knack for making people laugh.

The mum-of-two was a familiar face at Goldbergs years at a time when the Tollcross shop was among the busiest stores in the country.

When it closed in 1990, Maureen fondly recalled happy times there with colleagues and friends.

That should have brought to an end the mum's links with the bustling Edinburgh store. So how could it be possible that her time there may have condemned her to a terrible sentence, one which would come back to haunt her and her loving family 20 years later?

And did Maureen eventually lose her life because of where she worked?

Today, ask David Wood to sum up the loss of wife Maureen to an asbestos-related condition and he responds with a bitter shake of his head.

"I feel like someone's ripped out my heart and stamped on it," he says, eyes flashing with rage. When he stands up, his jacket hangs loose around his wasted frame: "Look at me," he adds, angrily tugging at it, "I've lost two stones. That's what this does to you.

"When people use the word 'devastation', invariably those are people who don't know what it means."

David has been painfully recalling the loss of the woman he met when she was just 16 and he was 19, and who went on to be his wife for 41 years.

He has patiently explained how, when she died on February 25 aged just 58, it was after a determined and brave fight that stretched across five difficult years. And how, when Maureen learned she had a life-threatening condition with a strange name, her response was typical for her: she cracked a joke and pointed out that mesothelioma sounded like some Greek holiday resort.

With the consultant's diagnosis still ringing in their ears, David remembers them both walking out of the hospital and, still numb, going for a pizza and then to the pictures. "We couldn't take it in," he says.

All the time Maureen's horoscope for the day was rattling around her head: "You will have mental moments of clarity," it had predicted.

Five years on and clarity is the one thing David yearns for. Questions over why his wife ended up with an illness more commonly connected with men working in heavy industry - mesothelioma tends to be associated with shipbuilding on the Clyde, plumbers and carpenters, not women in shops - gnaw at him so much that he is now determined to unravel them for himself.

The very nature of asbestos - the fact that it's hidden in so many places and that its deadly impact lies dormant for many years - makes his challenge desperately difficult. But as he's rewound Maureen's life and work, David now believes it's possible its root may lie behind the scenes at that Edinburgh shop.

Which is why today he's launched a personal appeal for anyone who worked at Goldbergs at Tollcross to come forward, whether they knew Maureen personally or simply recall work being carried out at the shop.

"I don't know where Maureen was exposed to asbestos," he stresses, "but I do believe the firmest evidence I've found points to Goldbergs."

His search for answers took him to old documents retained by Edinburgh City Council relating to the demolition of the Goldbergs building in Tollcross. There he found reference to various types of asbestos in the building, including Amosite, one of its most deadly forms.

"The report mentioned asbestos and all the precautions that the council was insisting on during the demolition, such as sealing off the whole area with a special type of material. They were concerned about the workmen and members of the public," he explains.

"But no-one was aware of the asbestos when Maureen was working there. She worked in the stockroom, which was in the basement. It was a dirty place to work, particularly the office. They were always moving things about too."

Asbestos was commonly used in the construction of many buildings until the late 1990s, when its use was finally outlawed. Its heat and fire resistant properties meant it was regularly used for ceiling tiles and wall panels.

Left alone and undisturbed, it is usually relatively safe. However, if asbestos particles are released and inhaled - perhaps during repair work or demolition - the impact can be deadly. Asbestos-related conditions often take decades to emerge, making it complicated and challenging to track down the source.

David, 60, believes someone might remember his wife at the shop and perhaps can help solve the mystery.

"Maureen worked there between 1981 and 1987. She was in the stockroom and the shoe department, the china department, and at Wrygges, the women's fashion department. She was a part-time model - she was gorgeous - 5ft 4in, brown hair that she changed all the time, sometimes long, sometimes curly.

"She had a friend, Doreen, and she was fond of the handyman there, Solly or Solomon, who was thought to be related to the Goldbergs family."

The couple lived in Gilmerton at the time with son Paul, now 40, and Karen, 38, later moving to East Calder while the children remained at Holyrood High School before the family eventually moved to Dunblane.

Maureen's health was fine until late 2004, when she developed problems with fluid gathering in the lining of her lung. That can be a classic symptom of asbestos-related cancer. It took several months to confirm largely because she did not fit the normal pattern for the disease. David is now working with a Glasgow law firm and his search for answers is being supported by Clydeside Action on Asbestos.

A spokesperson for the campaign group says: "Mesothelioma is an incredibly painful experience for victims and their families. Finding the root cause and who was responsible for asbestos exposure can go a long way to helping victims and their families deal with the illness and get justice.

"People who used to work at Goldbergs could hold answers to Maureen Wood's mesothelioma, so if anyone was working there at the same time and can remember any possibility of being exposed to asbestos then it's important they get in touch."

Can you help? Contact Thompsons Solicitors on 0800 801 299.

Killer disease

Asbestos-related cancer kills around one person every four hours in the UK. And more than 1.8 million people are exposed to deadly asbestos every year.

According to the Health and Safety Executive, at least 5000 deaths from mesothelioma a year are expected by 2015 - but that, say some experts, is a conservative estimate. Almost every building constructed before 1999 will have asbestos used in its construction, often in insulated boards and ceiling tiles.

Tom Marshall, a lawyer specialising in asbestos-related conditions working with Glasgow-based Thomson Solicitors says it's often difficult to identify where female mesothelioma patients first came into contact with the substance. "They do not historically carry out the types of work that would automatically come into contact with asbestos, such as engineering or building. Because of that, they are also less likely to be aware of the risks."

Edinburgh Evening News July 19, 2011

THE MOTHER OF ALL DILEMMAS

IT'S an exhausting time for teacher Diane Robertson. She's busy clearing out her classroom before the end of term, juggling last-minute tasks around her expanding bump, dashing to antenatal classes and trying to find precious time to relax and do some yoga.

"I'm 33 weeks pregnant now," she says. "I'm looking forward to the school breaking up for summer and just having some quiet time before it all starts."

Her baby is due to arrive in early August, a first child that Diane and partner David Turnbull had often wondered they'd have.

At 37 years old and having tried for three years to become pregnant, Diane found herself branded "too old" to have a baby.

"I couldn't believe it," she says. "I'm fit and healthy. The only problem was that we were trying for a baby and it wasn't happening. But to be told at that age that you're too old . . ."

Diane's road to motherhood is a cautionary tale for young women confronted with the dilemma of choosing career or children.

Like many of her generation, Diane poured her energy into putting her university education to use - in an ironic twist, she works as a health and welfare teacher at a secondary school - then setting up her home and spending time with her partner.

However, as her attention shifted to having a family, precious time was running out.

Just as her body clock began to tick at its loudest, she found herself falling into the same "parent trap" that many smart, educated women like her are discovering to their cost.

When, after months of trying and failing to conceive, Diane and David sought help from their local NHS hospital, they found long waiting lists for treatment that meant by the time they reached the top, Diane would be over the age limit to have that treatment.

"I underwent tests that showed there was no obvious reason why we couldn't conceive," Diane explains. "So we couldn't believe when they said 'sorry, you're going to be too old'. It was shocking."

According to Gwenda Burns of Infertility Network UK, Diane's story isn't particularly unusual.

Indeed, it's an increasingly common complaint among couples in their mid-30s who, as their desperation to start a family reaches a peak, contact the organisation for support.

"There is a problem at the moment in Scotland because the waiting lists are growing all the time," Gwenda says.

"In some respects, Scotland is better than England because of the types of treatment available, but the waiting lists are causing huge problems.

"If you are 35 or 36 years old and you go on a waiting list that can stretch to three-and-a-half years, you might manage to get one cycle of treatment before hitting the cut-off age.

"But will one cycle be enough to get you a baby?"

With no NHS options, the pair realised their only hope for a family would be to raid their savings and go private.

They approached IVF Scotland, Edinburgh's only private in vitro fertilisation facility, where, after just one cycle of treatment, Diane's pregnancy was confirmed.

However, it's a journey towards parenthood that has cost them almost GBP5000 and has tested their relationship.

"I know that Diane feels quite strongly that having worked all her life, paid taxes and having gone on to build a career as principal teacher of health and wellbeing in the school that she teaches, that it's unfair to be penalised by not being allowed to try IVF on the NHS," says David, 32, a business development executive at Walker Street market research firm, Lynn Jones Research.

"Diane's not that old. Essentially, you are being penalised for making sure you have the means to provide a good life for yourself and your family.

"With more women establishing a career first these days, this means more women are being cut off from the chance of having free IVF treatment," he adds.

"I suppose the counter argument would be, therefore, that you can afford private IVF but that's not really the point."

Their experience shows how easily couples can slide into a fertility nightmare.

Like many of her generation, former Firrhill High School pupil Diane had been determined to forge a career.

She studied at Queen Margaret University, completed her teaching degree at Moray House, then in her mid-20s sought a teaching job. She met David, a George Watson's College former pupil who studied at both Heriot-Watt and Napier universities, and decided to set up home in Dunfermline.

"We had some time together as couple and then started thinking about a family," says Diane. "But it was a year before alarm bells really started to ring."

The route to getting help, however, turned out to be painfully slow.

"I went to my GP and he said to come back after six months if nothing had happened and that I should try to relax. By the time I was referred to our local NHS Fife IVF hospital and tests started, it was two years down the line.

"I was 37 years old by then. There were no real factors to prevent me falling pregnant - ours was 'unexplained' infertility.

"Then I was told the waiting time was so long that I wouldn't get to the top of the list in time. It was devastating."

When Spire Healthcare opened its GBP25 million fertility unit, Shawfair Park Hospital, near Danderhall, in April last year, it confirmed it would not bar any patients because of age. Diane and David were among its first patients.

Figures for its first year show it is achieving above national average successes, with pregnancy rates for patients under 35 running at 48 per cent compared with 33 per cent.

Lead consultant at the clinic, Dr Joo Thong, says the figures give hope to patients who find themselves having to consider private treatment: "The figures are incredibly promising. IVF treatment isn't cheap, so it's important that every single patient has the best chances possible to become pregnant."

Ticking Clock

WHILE government in vitro fertilisation guidelines call for hospitals to treat women up to the age of 40, NHS Fife's criteria for assisted conception states that women should be under 38.

Gwenda Burns of Infertility Network UK says the waiting list for treatment in the area is three-and-a-half years.

"As far as Fife goes, you have to be fairly young to get the maximum treatment of three cycles - particularly as you have to drop to the end of the list should treatment fail."

It means that three failed attempts at IVF could take as long as ten years.

NHS Lothian, meanwhile, offers IVF treatment to women up to the age of 40. The waiting time is two years.

Private IVF treatment typically costs around GBP5000 per cycle. Spire Healthcare treats approximately 40 patients every month.


Edinburgh Evening News 24 June 2011

'We're fighting for the loved ones left behind by drugs misery'

TWO years ago Keith Fowler was a joiner. He'd get in his van in the morning, do what needed done, then come home in the evening with hands rough from working with wood, and dirt from an honest day's graft under his nails.
If anyone had said to him then that one day he'd mingle with society's select few at a royal garden party, stand in front of MSPs, police officers and university professors and tell them straight, in his ordinary working man's voice, how to make things better, his reply would have been straightforward and to the point.

He'd never have believed it.

But today Keith has a voice that's hard to ignore. It was always strong and his language pragmatic, now it's also revealed itself to be articulate and passionate, words spilling out ferociously fast, devastatingly poignant.

This is a voice that perhaps even he didn't know he had. And Keith found it following the tragic death of his 24-year-old son Perry. "The thing is," he explains, bristling with intense resentment. "That once someone is dead and it's drug-related, it becomes like it's not a problem any more.

"The typical attitude is 'well, you haven't got this drug problem in your life any more, so off you go, get on with it'. But it doesn't go away at all. In some ways, it's just the start.

"All I am is a joiner," he adds with a shrug. "I sit there in my old suit in front of doctors and professors, people from the Scottish Crime and Drug Enforcement Agency, specialists and all that, and I try to explain it the only way I know how."

Keith is perched on the edge of his living room armchair talking about how he's morphed from joiner to the voice of Scotland's grieving parents, siblings and friends of drug addicts.

As he talks, overlooking him on a shelf is a framed photograph of Perry, handsome, fresh-faced and oozing life.

Keith found him upstairs on a Sunday morning, July 6, two years ago
He'd gone to Perry's bedroom to jokingly chide him for taking his cigarette lighter, but when he threw open the door it was to find him lying lifeless from a drug overdose.

The nightmare which started five years earlier when the family discovered Perry, traumatised by terrible violent attacks in his childhood, was taking drugs had now entered a new, harrowing phase.

Simply dealing with their own grief might have been enough but Keith and Perry's mum, Debbie, had other ideas.

Later this month, the Perry Fowler Trust Family Support Group, will meet in Musselburgh; a meeting open to anyone who has watched a loved one wrestle with drugs or alcohol.

It's a chance, says Keith, for people to find their own voice or just listen to others share how addiction has affected their lives.

"We want recognition for what families go through," he says. "There's enough out there for drug users, there's enough education programmes in schools and there's enough support for people who are the addicts.

"But what about the people who have to put up with the abuse? The ones who are stigmatised in the community because there's a drug or alcohol user in the family? The ones who have to live through it too? Because drugs aren't just the abuser's problem, it's their problem too."

The couple, of Osborne Terrace, Port Seton, were still reeling from Perry's tragic death and planning how to turn it into something positive, when it became clear the greatest need was close to home.

"The police were fantastic at the time," says Debbie. "But they're not counsellors. Once they'd moved on, we realised there was no-one to go to for help."

The couple were stunned when one bereavement counselling organisation admitted they couldn't see them for at least six months. "We had all these issues to think about. We were tormented thinking about the abuse he'd gone through and then how to deal with losing him.

"But there was nowhere to go," adds Keith.

Keith, 46, took the first steps to launching the Perry Fowler Trust and met with representatives from Scottish Families Affected by Drugs (SFAD), an organisation which encourages the formation of local support groups.
His passion and determination was getting noticed.

Soon his straight-talking calls for support for families led to a position on the National Forum for Drugs Related Death in Scotland,sitting alongside Crown Office representatives, doctors, crime specialists and addiction experts.

It's largely down to him that its latest submission to the Scottish Government calls for services dealing with addicts to try to ensure support is in place for families, and even recommends national guidelines on how to guide grieving families through the complex legal issues they typically face.

Earlier this year the couple's achievements were formally recognised with an invitation to the royal garden party at Holyrood, where they mingled in circles they'd never before imagined would open to them.

"It was a bit strange," grins Keith. "There were all these people, all dressed up, and there was us."

As Keith's confidence has grown, he's appeared on radio and television, most recently representing the Scottish Drug Recovery Consortium, which last month hit headlines by calling for an end to the word "junkie".

"It's about not labelling people," stresses Keith. "We want people to look at the person, rather than the addict. We want them to remember that person has a family and they're not necessarily bad people because they are addicts."

Debbie, 47, nods. "I'd go to the shops and I could hear people say, 'That's her, that Perry's mum'. So I ended up not going. I knew my son worked and could be the nicest, most polite boy. Drug users aren't bad people, but drugs can make good people do bad things.

"But whatever he did I was never, ever not proud of him. I had 24 beautiful years with him. I loved him and he loved me."

She prefers to remain in the background of the Trust. Keith, she insists, knows how to put it all into words. "I feel the pressure of it," he admits. "There's times I wonder why I'm putting myself through it, because it can be hard when the phone rings and someone's upset because they've lost someone to drugs and want to talk.

"Or when I'm sitting in front of professionals.

"But people seem willing to listen, because if anyone knows what it's like to go through this, then it's us. It doesn't bring Perry back, but if doing this helps other people get through it, it'll be worthwhile."

The Perry Fowler Trust Family Support Group will meet at the Gate House, Lewis Vale Park, Musselburgh on September 22 at 7pm. Meetings will then be held every fortnight. For details log on to www.perryfowlertrust.co.uk or call 01875-811 155

Talented youngster's tragic end
Perry Fowler went to Cockenzie Primary and Preston Lodge High School.

He was a talented artist who loved sport and was said to have had potential to compete at international level weightlifting.

However at the age of 13 he was attacked near his home by two other boys.

He was beaten and shot at with an air gun, reawakening memories of another traumatic event in his youth. Perry had kept secret until he was 15 that he'd been raped when he was just eight years old while living in England.

His parents believe his anguish sparked his downward spiral into drug abuse, culminating in heroin addiction.

Ironically, Perry had weaned himself off the drug and had been clean for seven months until his fatal overdose.

sdick@edinburghnews.com