WATCH: 2 Years with Juvenile Dermatomyositis

An update on our daughter’s battle with the rare disease, Juvenile Dermatomyositis (JDM).

JDM is a Myositis disease where the immune system goes hyperactive. Instead of just fighting off a sickness or an infection, the body attacks itself. It can steal a child’s ability to walk, play, and in severe cases even the ability to swallow. With JDM specifically, the disease presents as a facial rash and calcinosis of the skin. Those are inconveniences compared to what’s going on inside, the immune system attacks the muscles. 

Currently, there are still no FDA-approved treatments for JM. Despite that, progress has been made for this disease and much of that is due to the dedication of a charity called Cure JM. Because JM is rare, research is only made possible through the incredibly generous people who make contributions. There are now more new treatments in development for JM than ever before. Drug treatments in the research pipeline may improve the lives of children, maybe even our daughter.

Right now there are 2 drugs on their way to clinical trials in JM patients One is a possible steroid replacement with far fewer side effects and complications to contend with later on. Another has already shown improvement in muscle strength and skin conditions in JM patients. The hope that these treatments give families with JM is hard to put into words. Cure JM invests in new treatments, clinical trials, creating centers of excellence, and establishing the Cure JM Clinical Care Network.

If you’d like to learn more, please visit curejm.org. If you’d like to make a donation to the charity, I have a page set up on their site where you can contribute in honor of our Munchkin at http://events.curejm.org/goto/M. This year’s theme is “Hope Heroes.” Gifts will fund JM research and help give children a brighter future and thanks to the Coffey Family, every contribution for Giving Tuesday will be matched dollar-for-dollar. If you prefer good old-fashioned checks by mail, those can be made out to Cure JM and mailed to Cure JM, P.O. Box 45768, Baltimore, MD 21297 with Golob Family in the memo.

Thanks so much for watching and for your support!.