Cure JM Foundation
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Emily was tentatively diagnosed with JDM on October 4, 2010. She also has arthritis, Raynaud's, & scleroderma features stemming from Mixed Connective TIssue Disease. We thought that her problems were a result of her arthritis, so we took her to her rheumatologist to change her medicines. He happened to notice that her eyelids were "colored". We had noticed that her eyes looked red all of the time, but we thought she was just tired. We had no idea that this was the classic DM heliotrope rash. He then tested her arm and leg muscles for weakness, and told me that we would have to tell her school to be careful as she might fall easily going up and down the stairs, and she may not be able to brush her own hair or write. He then left without ordering any testing or giving her any steroids- the only treatment for JDM.
We were blessed enough to get her in to see another pediatric rheumatologist about a week later. She admitted Emily into the hospital immediately for six days for massive steroid pulses and testing. An upper GI confirmed that Emily had muscle weakness starting in her throat. Thank God we changed doctors! Many children are seriously affected in their throats. Muscle weakness there can lead to a child not being able to speak, eat or breath without a tube!
Emily has done very well since being on the steroids. She has a lot of steroid swelling, aka Cushing's Syndrome, but she can walk! Her endurance is almost non-existant. Anywhere that we go that requires a lot of walking she takes her chair for. However she's ok at school all day without it. We are very hopeful that another few months of steroids and increasing another medicine, Methotrexate, will help her get back to being more like her old self. We miss our little girl as she was!!! Please help us to find a cure!