I am running the 2011 London Marathon for Research into Juvenile Dermatomyositis (JDM) at the Institute of Child Health through Great Ormond Street Hospital.
In September 2009 2 months before her 5th birthday my friend’s daughter, Callie, was diagnosed with Juvenile Dermatomyositis, the previous year just before her 4th birthday she was diagnosed with Type 1 Diabetes. She spent the first year in and out of Queens Mary's Sidcup and Great Ormond Street Hospital.
JDM is very rare it affects 2 - 4 children in every million and can be very serious, even fatal. This is a disease where the immune system attacks parts of the body. It primarily affects the skin and muscles, but can affect other parts of the body, such as joints, lungs and blood vessels. Dermatomyositis in children is different to that affecting adults, so specialist research into the childhood disease is necessary. The most severe patients are very difficult to treat and require specialist care from a range of healthcare professionals. We watched Callie change from a healthy child into one that lost the ability to ride her bike, become unable to sit down unaided, struggle to climb stairs and even walk.
Callie was very lucky in the sense that Queens Mary's Hospital Sidcup had seen a case of it before and so she was diagnosed relatively quickly (although it was nearly 4 months from the first signs of the disease until she was actually diagnosed). She was then put on a treatment of steroids.
She has now been weaned off of the steroids since last June and she has a community nurse from Queen Mary’s that comes to the house once a week to give an injection of Methodrexate, which is a small dose of chemotherapy, she also takes folic acid and calcium tablets, she will have these injections for the next year so come Christmas they will wean her off of the Methodrexate and basically Callie will be in remission or the JDM could come back at any time, she will be monitored at GOS regularly up until she is sixteen.
At the moment because of the medication she is on, the JDM is under control, she is a very active little girl she does tap and jazz and Swimming lessons and can do all the physical activities that her friends take part in, to look at her you would not think their was anything wrong with her, the Diabetes seems to be more of a challenge to deal with on a day to day basis.
Please see attached link for more information regarding this disease http://www.jdrg.org.uk
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