Written by Matthew A. Piacentini Friday, 09 December 2011 00:00
After reading last month’s feature that shared one mom’s experience with juvenile diabetes, another Long Island parent contacted Healthy Living about JM, a rare but terrible affliction that he believes people need to hear about.
Juvenile Myositis (JM) is extremely rare, affecting three children in a million. Chris Madison of Manhasset told Healthy Living that his child is one. He is holding a free event at the volunteer fire department on Bayview Avenue in Manhasset on Dec. 17 from 11 a.m. to 4 p.m. to benefit The Cure JM Foundation, and includes a day of fun for the kids including music, food and raffles.
JM is an autoimmune disease, with the primary symptoms being weak muscles and / or skin rash. JM affects every child differently. Some children experience a mild form of the disease, while others follow a more severe and potentially more debilitating course. For many children, life becomes very hard. Some can no longer ride a bike or play. Some cannot even get out of bed. For some, the disease is fatal.
JM involves the immune system’s cells that normally protect the body from infection. These cells cannot turn off their fight and therefore damage the body instead of protecting it. This leads to weak muscles and skin rash as the body creates inflammation.
Madison is trying to spread awareness on JM because he was so shocked to first learn that his daughter was suffering from something so severe that he had never heard of. Not only was he unfamiliar with the affliction, but Madison found that the medical community is not very aware either. That is why he is holding the fundraiser.
“I had heard of autism, I had heard of juvenile diabetes,” he shared. “There are risks we all know about, but I had never heard about JM.”
Madison said that his daughter had some symptoms of a rash that led him first to their family doctor. “He had no idea and referred us to a dermatologist,” he said. “They had no idea either. So, we went to a pediatric dermatologist. He was pretty sure but wanted us to see a rheumatologist, and that is who finally diagnosed this. That is part of why I am doing this fundraiser, because I have found that many parents are having a similar experience. It takes six months to a year to get the right diagnosis of JM, and that is time when a treatment should already be started.”
Madison was surprised how complicated it is to deal with JM after the diagnosis. “I thought, ok, you take a pill and it goes away,” he said. “But it is not like that.”
The organization that Madison – along with many other parents across the country - has found to be a big help is called The Cure JM Foundation. That is why he is raising money to aid their efforts at his Manhasset fundraiser.
One of the founders of Cure JM said that many people say their kids may have been diagnosed incorrectly if not for the Cure JM website, explaining, “They saw a picture and took it in to the doctor and said ‘This is what my child has.’ And they were able to diagnose the child much earlier.”
Because there is no cure, and the disease varies from child to child, it is key to identify JM as soon as possible to begin experimenting with treatments.
One family Madison knows of thought that their young child was simply acting out when they stopped doing things on their own that they had already learned to do.
“The parents had just had a new baby, and they thought the older child was rebelling out of jealousy to get attention,” he said. But, eventually the diagnosis was that JM was taking away the child’s physical capability.
Madison and others said they have found it very helpful to network with one another across the country to share experiences and information as it comes out, because the disease is so rare. Through the Cure JM site and a private group that parents can join on Facebook, many are finding much needed help and camaraderie.
“When you hear that your child has a disease that three in a million have, you expect never to meet anyone with this, but here we have this whole community out there,” said one parent of the Cure JM site.
A child fighting JM said, “It felt really good to know I wasn’t alone.”
Madison said that through the Facebook group and his dealings with Cure JM, he realized how bad the disease can get. He has heard stories of children who could no longer do anything on their own. Some were even worse.
“Some parents posted a picture of their daughter when she was 13-years-old. They said, ‘This is the last photo we took just before she died of complications from JM.’”
Some children experience a mild form of the disease and may go into remission; others follow a more severe and potentially debilitating course that can be lifelong. About one-third of JM patients will have some form of functional disability. Some will battle an array of serious complications, resulting in the inability to walk, ongoing pain, disfigurement and even death.
Pictures of symptoms and more information can be found on The Cure JM Foundation, a 501(c)(3) nonprofit organization and all-volunteer group managed by families and friends of JM patients, at www.curejm.org. The organization was established in October 2003 with the goal of raising awareness and funding research to find a cure for Juvenile Myositis, including Juvenile Dermatomyositis and Juvenile Polymyositis. The founders of the Cure JM Foundation are Harriet Bollar, grandmother of a child with JM, and Shari Hume and Lisa Felix, both mothers of children with JM.