MS Awareness Week: vital medical research for children
Action Medical Research, the UK children’s charity, is marking Multiple Sclerosis Awareness Week (29 April – 5 May) by celebrating investment into vital medical research into the condition.
Estimates suggest up to 10 per cent of people with MS experience the first symptoms in childhood: tiredness, dizziness and problems with their sight, balance, memory and concentration. Damage to the nervous system causes MS and the symptoms cause distress and disrupt school and family life.
There is no cure for MS, no way of predicting how a child will be in one year, in five, or 10 years’ time, and no way of knowing how they will respond to treatment. At first, symptoms of MS that a child suffers may come and go but, as time goes on, they will develop permanent and devastating disabilities.
Action Medical Research is currently supporting two research projects which could lead to badly needed new treatments for MS. New for 2013 is a project looking at what causes damage and destruction of the nervous system. Professor Christopher Linington, at the University of Glasgow, is investigating what causes this damage.
Evidence suggests that certain antibodies in the blood of children with MS ’attack’ their nerves. The damage caused by this process may influence how severe their condition is and how quickly it progresses. Professor Linnington suspects this is the case and, if his research proves it, then treatments that have already been used to tackle problem antibodies in other illnesses might benefit children with MS.
In the second project researchers at the University of Birmingham and Birmingham Children’s Hospital* are investigating: how many children have MS, how it progresses during childhood, and what sort of treatment works best. This knowledge gap may be causing delays in diagnosis and treatment.
Interim results have already shown that the UK has the highest reported incidence rate in the world of children who experience their first ‘MS-like’ attack in childhood - around 125 children every year at an average age of 10. Children who experience a second MS attack at a young age are usually diagnosed with childhood MS.
Medical research can save and change children’s lives, like those with MS. Yet surprisingly, medical research into conditions that devastate children’s lives is poorly funded. The charity is also currently funding research into conditions including Down syndrome, premature birth, epilepsy, meningitis and rare diseases.
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NOTES TO EDITORS:
*Jointly funded with the Multiple Sclerosis Society
Rachel is now 18 and was diagnosed with MS when she was just 13 years old. Right now she is feeling good and her MS symptoms are less severe. She is on a new treatment that she has to have at the hospital directly into her vein every 28 days. This has helped to lessen the fatigue and make day-to-day living less of a struggle so that her hands and eyes are more reliable: she hasn’t had to operate the microwave with her nose since starting the treatment!
Just six months ago Rachel says she was feeling horrible. “I lost sight in both my eyes, I was shaky and unable to think, I was so tired. Being at college and coping with my MS was very hard. It can be a struggle to concentrate and learn. It’s hard enough using all my energy to stay upright and keep my eyes open!" she says.
Karen is in her 40s and also had her first symptoms of MS when she was a young teenager like Rachel. She says, "when I was fourteen I was forever complaining of being tired and run down. My parents and GP just put these symptoms down to a viral infection.
"I had weeks off sick from school and I was then tested for glandular fever and the result came back positive. I was too tired to eat, I was always sleeping and just didn’t feel like me (I usually spent all my time out at dance lessons, after school clubs and youth discos). I then became too unwell to attend school and I felt very ostracised from my friends and fell behind with school work." This was only the beginning of Karen's experiences with MS.
For more details, or to arrange an interview, contact Toni (details below).
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Action Medical Research is a UK-wide charity saving and changing children’s lives through medical research. We want to make a difference in:
- tackling premature birth and treating sick and vulnerable babies
- helping children affected by disability, disabling conditions and infections
- targeting rare diseases that together severely affect many forgotten children.
Just one breakthrough, however small, can mean the world.
Charity reg.nos 208701 and SC039284.