20 SUNDAY EXPRESS June 29, 2014 features

‘I would be sitting in the car and faint,

and when I came round I was in agony, screaming’

New start for Karen – who’s allergic to life

For three years Karen McCormack baffled doctors by constantly fainting – PAULA MURRAY meets the teen suffering from rare condition Postural Tachycardia Syndrome

AFTER shaking off a slight stomach bug, Karen McCormack was looking forward to her friend’s 14th birthday sleepover. But the next day she woke

up to a devastating illness, possibly brought on by the virus, which some have compared to being allergic to life.

Now 17, the pretty brunette recalls how she fainted at her friend’s house three times over the course of that fateful morning.

Her parents, Marie, 50, and Alan, 48, of Garrowhill, Glasgow, were alerted and the concerned couple immediately took Karen to hospital.

Despite the initial diagnosis that fainting “was just something that happened to teenage girls”, Karen was sent home from school every day the following week because she kept passing out.

What ensued was three years of hell during which time Karen missed out on so many classes she’s now having to repeat her sixth year while all her friends are heading to university. Yet, there is no sign of bitterness.

“I haven’t fainted for almost a year,” she grins. “The last time I fainted was on August 24 last year.

“I am much better now than at this time 12 months ago. I was unbelievably unwell. I couldn’t take a shower on my own because I didn’t have the strength to stand. I had to be carried up and down the stairs.

“I would be sitting on the backseat of the car and faint, and when I came round I was in agony, sometimes screaming with pain.

“It was horrible. I could tell when it was coming on. I’d go all white and quiet and my vision would start to go. That was it. I could be gone for anything from just 20 seconds to up to five minutes, and afterwards I would have no energy at all. I was totally lethargic and just wanted to sleep.

“I had to use a wheelchair and I would be bed-bound for weeks if not months on end.”

Despite Karen’s physical symptoms, doctors struggled to understand what was wrong and eventually suggested it was all in her head.

Their dismissive attitude deeply affected Karen who admits there were times when she began to doubt herself.

“When you are constantly told you are making it up, that you are seeking attention, you start questioning yourself. You wonder if it really is in your mind, if you really are imagining it. You really start doubting yourself – is that really the case? Am I causing this all? It was awful. It was as if nobody took it seriously.

“I think it was my second stay in hospital when I fainted in front of the nurses and they got a fright. They’d never seen it before.”

Karen saw a number of doctors, a neurologist and even a psychiatrist, but they were none the wiser.

Although she was eventually diagnosed with the autoimmune disorder Postural Tachycardia Syndrome (PoTS) – an abnormal increase in the heart rate associated with an upright position – consultants were at loss as to how to treat it. Karen

was told to go online to find more about it. She was also put on different drugs, from beta blockers to steroids, to control the faints, but nothing worked.

It wasn’t until her mother approached a specialist in Newcastle-upon-Tyne and wrote to Professor Julia Newton last year that her life took a turn for the better.

After seeing the clinician in England she was prescribed angina tablet Diltiazem which brought the fainting to an end. Now Karen is preparing to celebrate the first anniversary of her “new life” with a family holiday to Lanzarote, in August.

“I was always worried I would not be able to drive,” Karen smiles. “But I’ve been told I can now. It’s very exciting.”

GETTING to where she is now wasn’t easy though. After a brief pause, Karen adds: “It didn’t go all that smoothly. I had just been put on the new medication

and was able to go to school properly for the first time in ages when I developed a really bad abdominal pain, nothing to do with the drugs.

“I knew something was wrong and called my dad to take me to the A&E. When we got there they kept looking at my leg, which was purple, asking what was wrong with it.

“I kept telling them I had no idea, I wasn’t there for the leg anyway but for my tummy. Turns out I had developed a massive blood clot and was lucky to survive.”

Her prison officer father Alan admits the past years have been tough for the family: “It’s been total murder. We always had to make sure someone was in the house for Karen. We

didn’t want to come home and find her collapsed on the floor.”

Marie, a secretary with Scottish Engineering, said: “As a mother you know when there is something wrong with your child, yet it seemed impossible to get help.

“It has been a huge strain on us all. But we seem to have turned the corner.Karen has been amazing. When I’ve been upset she’s the one who’s said, ‘Don’t worry mum, I’ll be OK.’

“We don’t know why Karen got PoTS, but think it may be connected to the stomach bug. Although you can grow out of it, it is unlikely in her case.

“But her little sister, Louise, who is 12, will only have to faint twice and I’ll be straight at the hospital demanding tests for PoTS – although it is unlikely she’ll go on to develop symptoms.”

As for Karen, she is quite happy to repeat a year at St Ambrose High School, in Coatbridge, where the staff have always supported her.

“It will be strange,” she admits. “Literally all my friends are leaving school this year and they are all saying they can’t wait.

“But because I’ve missed so much of it I am not actually ready to leave yet and my school has been great.

“I want to get my grades, then do a year in college and go on to university to study to be a teacher.

“I’ve gone through a time when I kept asking, ‘Why me?’ But I’ve changed. I’ve done fundraising and I

SUNDAY EXPRESS June 29, 2014 21features

think it is important to raise awareness as much as we can. Nobody really knows how common a condition it is, but we do know it is not rare – it is just under diagnosed.

“It has been described as if you are allergic to exercise, but for me it was more of the case that I was

encouraged to move but my body was so knackered I found it hard. But it affects us all differently which is why it is so hard to diagnose.”

Dr Lesley Kavi, trustee with the charity PoTS UK, said the condition was only named and defined in 1993 meaning it is still relatively unknown

among the medical profession. She added: “Many if not most of our PoTS UK members are told their symptoms are ‘all in the head’ before they finally get a diagnosis.

“They are often misdiagnosed with anxiety, depression, vaso-vagal syndrome and chronic fatigue

syndrome. In a recent study, the mean time from symptom onset to diagnosis in the UK was eight years.

“Expertise in Scotland is limited and we are aware of patients in Scotland and all over England who seek medical help in London. But the waiting lists at the two larger

NHS centres in the city are one year to first appointment, a year for tests and another for follow-up appointments. Consequently, patients have to find money to access medical care privately. Yet 90 per cent of patients respond to treatment once diagnosed.”

fIGHtING Her WaY BaCK tO HeaLtH: Karen McCormack with mum Marie and dad alan

Picture: GRAEME HUNTER

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