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Dr Paola Giunti |
Understanding a rare and crippling disease
Ataxia hits 5,000 people in the UK, but what is it?
A LEADING doctor has called for greater understanding of the rare and crippling disease Ataxia.
Dr Paola Giunti, a world authority on the disease from University College Hospital said: “Ataxia is one of the world’s lesser known diseases and it can be very difficult for people to cope with. Sufferers lose their voices quickly, get tired and can find social situations inhibiting. The condition needs more publicity because there is so much ignorance and misunderstanding among the public.”
Ataxia is a neurological condition that impairs muscle function, making sufferers unsteady on their feet and walk with a ‘drunken sailor’ gait.
One of Dr Giunti’s patients, who asked to be referred to by his first name, James, talked about living with the condition. “People stop me in the street and accuse me of being drunk. The condition makes me slur my words and sway, which can make social situations really embarrassing. Naturally people are ignorant of the condition so I have to carry around an ID card explaining it.”
James, 49 can’t go outside much any more – when he does, people point and stare and sometimes he gets picked up by the police. He lives on his own near Camden Market and suffers from cerebellar ataxia which is slowly killing him.
More than 5,000 people in the UK have the condition, for which there has no known cure. “Sometimes I can’t even stand up and it is very difficult getting words out. I can’t speak for very long without having to take a rest. I do all my shopping on the internet and when I do go out I use a walking stick and someone has to accompany me.
“Getting dressed, something that most people take for granted is a daily struggle. I have to wear T-shirts and slip-on shoes because my hands just don’t move. The physio helps but sometimes I’m just too stiff.”
James, who was diagnosed with the illness when he was 37, also suffers from tremors, extreme fatigue and has difficulty controlling the volume and pitch of his speech.
At the onset of the illness James was divorced from his wife and had to give up his job as a care assistant.
He said: “I have really strong support networks from my two sisters and the charity Ataxia UK have been great, but I find the illness holds me back when it comes to making relationships. It makes fancying someone so much harder.”
With the help of the charity Ataxia UK and the staff at the London Ataxia Centre at UCH, James is becoming more comfortable with himself and is starting to relish life again.
“I used to be very sporty, I played football and squash every week but I don’t miss it that much any more. I’ve started reading a lot more and the charity has put me in contact with lots of other people with the illness.
“I enjoy learning about the condition and helping people deal with it. Since I was diagnosed I kept all my old friends and made a whole lot more. My condition is getting worse but I have faced up to it and I look at life positively now.”
The London Ataxia Centre was established in 2005 by Dr Giunti.
For information on Ataxia, its causes and how to cope with the condition visit www.ataxia.org.uk
Mathieu’s David’s new signing
ARSENAL footballer Mathieu Flamini signs up to become a supporter of the Whittington’s bid for foundation trust status, with chief executive David Sloman.
Whittington hospital opened its doors to the public earlier this month to offer a warts’n’all look at how a busy modern hospital functions.
In addition to talks and tours, visitors donned scrubs and were treated to demonstrations of how the latest technology is furthering medical advancement in the haematology and pathology departments.
The guests sampled some of the 900 lunches served up every day by the hospital’s canteen.
In the oldest part of the hospital they were taken through the maternity ward where 3,500 babies are delivered each year.
Mathieu and club colleague Aliaksandr Hleb joined the fun and signed up to become backers of the Whittington hospital’s foundation trust application. |
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