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My son is currently 18 and was diagnosed at 6. He is doing fine. It has been a very long road but he leads a relatively normal life. He is receiving IVIG now and has been for the last 3 years, due to the onset of calcinosis. Lisa Rider from NIH (National Institute of Health) is a wonderful "free" resource. We only live 2 hours from Washington DC so a trip to see her for us is easy. However, people from all over come to see her. When we were there, there was a child who had come all the way from Colorado. I would recommend this. Early intervention is HUGE for successful treatment! She and her team work with our doctor who is in Richmond VA to help come up with the best treatment plan for my son. Please advise her to contact Lisa Rider at NIH. She can find the contact information online. She can also become involved with Cure JDM organization who is very helpful.

May 16, 2017 - 11:05am


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