Saturday 16 December 2017

New breakthrough for sufferers of dystonia

Improved drug helps those with serious movement disorder, reports Aileen O'Reilly SUFFERERS of a debilitating neurological movement disorder known as dystonia have been given fresh hope with the launch of a new treatment in Ireland. The treatment that is used in cosmetic surgery to "freeze" muscles is now being used to manage the discomfort and pain which this condition brings.

Dystonia is estimated to be the most common neurological movement disorder after Parkinson's disease, yet it is estimated that up to 3,000 Irish people suffer without diagnosis.

The condition affects people physically, resulting in uncontrollable muscle spasms, twitches, diminished use of limbs, loss of speech, and pain although the brain remains perfectly healthy.

Carol McCann is a mother of two who lives in Tallaght. Until October 1997 she was getting on with life with her two healthy schoolgoing children. Now, however, she is a full-time carer; Jennifer (17) and Stephen (19) are both wheelchair-bound with dystonia.

Jennifer developed the condition in October 1997 and Stephen developed it a year later. At the time Carol knew nothing about the condition, or that it passed on genetically and had in fact been in her family a few generations back but had been misdiagnosed when it occurred.

"Jenny is the more dependent of the two," explains Carol, who won the Tallaght People's Carer of the Year Award last year. "I have to feed her myself. Stephen can eat his food once it's cut up. I'm on my own so it can be difficult at times. I have a woman who comes in on a daily basis for a couple of hours. She generally looks after Jenny and washes her hair and makes her comfortable.

"When it struck Jenny, she was a normal healthy girl attending secondary school. Then one Friday evening she started to complain of a pain in her little finger. Over the weekend it developed into her arm. Then she developed symptoms of meningitis.

"We rushed her to hospital but it took the doctors five weeks to find out what was wrong with her. By that time she was totally rigid and she couldn't do anything. She's a little bit better now but she's on muscle relaxants and very strong painkillers every day.

"Stephen is on muscle relaxants too. He's more affected on the left side of his body, while Jenny is affected all over. A year after she first developed symptoms his left foot and arm started to turn inwards. I knew straight away without asking that he had developed it too." While Stephen is still able to talk, Jennifer has to communicate via an ABC book.

"They're terrific kids," says Carol, smiling. "Stephen has learning difficulties, but that's nothing to do with the dystonia. Jenny goes to a special school in Clondalkin. She's got a really sunny disposition, but of course she does get frustrated and depressed. She's a totally normal teenager apart from her body."

There are various different types of dystonia. In severe cases, the result can be a loss of speech, inability to open the eyes to see, and severe loss of mobility.

Sufferers who are diagnosed at present receive treatment with a Type A botulinum toxin, to which they can build resistance. The newly launched Type B botulinum toxin should provide a high level of pain relief and effectiveness without the patient developing resistance.

The launch was welcomed by Dr Michael Hutchinson, consultant neurologist at St Vincent's Hospital, and a co-founder of the patient support organisation Dystonia Ireland.

"Botulinum toxin injection is the treatment of choice for patients with all types of focal dystonia, in particular spasmodic torticollis. This newly launched Type B botulinum toxin has many advantages over the other forms of Type A botulinum toxin. It will be very much welcomed by patients who have had poor responses to the older forms of botulinum toxin and those who have become resistant."

Maria Hickey, a dystonia sufferer and another co-founder of Dystonia Ireland, says they provide support to 300 members but are aiming to reach at least 3,000 sufferers in Ireland.

* For further information on dystonia, contact Maria Hickey at Dystonia Ireland, 33 Larkfield Grove, Harold's Cross, Dublin 6W or telephone (01) 492-2514

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