ENJOYING a night out with her girlfriends, going for a leisurely walk or riding her horse are all activities that come at a price for Jane Barr, who faces a daily balancing act between work and leisure.
Even something as simple as going to a wedding or driving for more than an hour-and-a-half can result in the project administrator having to take time off from her work at the University of Edinburgh because of the mental fatigue it causes.
The 40-year-old suffers from Hughes Syndrome, an auto-immune disease which causes the blood to clot too quickly both in veins and arteries.
After developing a blood clot on the left side of her brain, Jane suffered a potentially fatal stroke three years ago and has faced an uphill battle to regain her speech, the use of the right side of her body and the functions of her brain lost through cell damage.
While around a million people in the UK are believed to be affected by the syndrome, also known as antiphospholipid syndrome (APS) or “sticky blood”, it is a fairly new condition and is not widely recognised. Once diagnosed, it is relatively easy to treat with blood-thinning drugs such as warfarin and heparin which help prevent clots building up in the body.
For Jane, who lives near Pathhead in Midlothian, the first sign she had of the condition was when she suffered from deep vein thrombosis on a flight in 1999. When the DVT wasn’t picked up, the clot moved from her leg to her lung. On her return to Scotland, she was admitted to the Edinburgh Royal Infirmary with a pulmonary embolism.
Having been diagnosed with antiphospholipid syndrome, she was initially prescribed warfarin, but after six months, because she was still only in her 20s, she was taken off the medicine.
“The next six years were a mixture of good and bad health, mainly with me suffering from visual migraines and tension headaches,” she says. “Only once did APS raise its head again when I was wrongly diagnosed with kidney stones when in fact I had a clot in my kidney. However, haemotology reviewed me once a year and life went on as normal.
“Fast-forward another three years, and I started to get tunnel vision out of my left eye, double vision at least five times a day and pain down the left side of my face. Three weeks after this started, I collapsed in my boss’s office, came to, was violently sick and sent to hospital.”
After a week in hospital, she was sent home with what she was told was migraine and a prescription for heparin, which she had to self-inject for the next three weeks.
Things weren’t to improve, however, and the next 12 months saw her suffering from daily facial pain, double vision and occasional numbness in her arm. On five different occasions she collapsed and then was violently ill, but despite seeing numerous specialists, no-one could provide an answer.
“One of the consultants suggested that it was just one of these things and he was sure it would go as quickly as it came,” she says.
It was only later she would discover she had in fact suffered a series of mini-strokes caused by a temporary blockage in the blood supply to her brain.
Having suffered so many similar episodes, when Jane developed a numbness in her right arm while mowing her lawn in April 2009, she thought nothing of it.
“I just thought I will keep going,” she remembers. “Because my right arm had become numb I pushed the lawn mower with my left arm. When I stopped, I thought ‘I don’t feel great’ and sat down. My partner came out to say something to me. I opened my mouth to reply but couldn’t say anything. I knew what I wanted to say, I could see the words in my brain like writing on an electronic screen. I sat down and put my legs up on a chair. I took my sunglasses off and my partner realised my eyes were looking in different directions.”
Her partner, Scott Brown, 43, immediately phoned the ambulance, and Jane found herself in the Royal Infirmary once again.
“The next 48 hours were traumatic to say the least, as I was fully aware of what was going on, but could not respond to anyone’s questions and couldn’t even manage a simple task like brushing my teeth,” she says.
Jane had suffered a stroke brought on by a large clot on the left side on her brain, causing the right-hand side of her body to stop working.
“For the next four weeks, I spent hours learning to speak again and teaching my right hand to move so that I could pick up a pen and for my right leg to do as it was told, so I could walk upstairs,” she says. “It probably took me three weeks to bounce a ball. It took me ages to pick up a pen or toothbrush. I practised with Jenga pushing out the blocks for hours and hours.”
Having been told that she while she might have to learn to walk again, it was likely she would regain only partial use of her arm and would have slurred slow speech, Jane became determined to make a full recovery.
This resolve was strengthened by the fact she had also been told she had only up to five years to recover the functions lost by the brain damage.
“I had a large clot on the left side of the brain and cells in that area will always stay dead,” she explains. “It’s just like roadworks. Your brain has to make a diversion around that area that’s dead. You can get from A to B but you have to go on a diversion. You can continue for up to five years. I’m holding out for that.”
It has been a long and difficult process, but after six months her brain was like that of a four-year-old and after a year it was like that of a 14-year-old.
Today, nearly three years on, Jane is back at work, and rather than having any speech problems, she not only speaks fluently but at a rate of knots when talking about her condition. The main side effect of her stroke is having to compensate daily for her brain damage.
“You just have to make choices every day,” she says. “Driving – I could probably drive no more than one to one-and-a-half hours. If I was driving further away to see someone, say, in Inverness, I couldn’t do it in a day because my brain wouldn’t function on the way back. I have to choose to go and see someone on public transport or get them to meet up halfway. From a social point of view, talking is one of the most tiring things. If I know I’m going out with the girls and it’s a noisy place, and I’m going to be talking lots, I have to take a day off the next day. All my friends compare it to ‘baby brain’.”
She is on warfarin and has her blood tested regularly. And while she finds it frustrating the blood clots could have been prevented if she had been prescribed the drug earlier, she prefers to focus on the positives.
“At the end of the day I could be in a wheelchair,” she says. “I could maybe not speak at all. After about the first month in hospital, they were not prepared for me to make a good enough recovery for me to work part-time. There was no discussion about me going back to work full-time or being able to live a fairly normal life.
“They have called me a miracle patient who defies logic. If someone tells me you won’t be able to do this, that makes me more determined to push myself. That’s why I have struggled with the tiredness. I’m making my brain relearn things. I’m always pushing my brain on a bit more to try and get as much back of my previous life as I can do.
“I’m not dead. That’s always the wake-up call. If it had not been a possibly fatal experience, I would be depressed. You realise you’re lucky that you’re alive.”
Trying for personal best
JANE Barr is taking part in the Bupa Great Winter Run in Holyrood Park on January 5 to raise money for the Hughes Syndrome Foundation, a UK-registered charity dedicated to raising awareness of and funding research into the condition.
It will be the first 5km event she has taken part in since her stroke.
“Hopefully, I will be able to run a little bit of it,” she says. “Fingers crossed, I will be able to complete it. It’s a personal battle to complete a 5km run just to prove to myself I can do it even if it’s not the distance or a speed I would normally go at.”
For more information about the event, go to: www.greatrun.org/events/
To donate money to the Hughes Syndrome Foundation, go to: www.justgiving.com/hughessyndromefoundation/Donate
‘Sticky blood’ is debilitating
• Also known medically as antiphospholipid syndrome (APS) and more colloquially as ‘sticky blood’, Hughes Syndrome is an auto-immune disease which causes the blood to clot too quickly both in veins and arteries.
• It can cause heart
attacks, strokes and deep vein thrombosis and, in
pregnancy, can lead to
miscarriage or stillbirth.
• Hughes Syndrome is responsible for one in five of all strokes and heart attacks in people under 50, and is recognised as the most common, treatable form of recurrent miscarriage.
• It can be detected with a blood test and, once diagnosed, treatment can be as simple as a low-dose aspirin or blood-thinning drugs such as warfarin and heparin.
• Symptoms include headaches and migraine, memory problems, dizziness, visual problems, extreme fatigue, thrombosis, strokes, recurrent miscarriage, heart attacks and pulmonary embolisms.
• Hughes Syndrome is named after Professor Graham Hughes, who first described the condition in 1983.
• For more information about Hughes Syndrome see www.hughes-syndrome.org