We are not Alone

I’ve stayed up late, unable to sleep, searching the internet for information about juvenile dermatomyositis over the past few weeks.  I ran across the CureJDM Website.  It was what I needed.  There are people advocating to find a cure.  There are resources, links to blogs, videos, a community, stories, fund raisers and events.  I even found a book, Myositis and YOU.  I ordered it right away.  FYI, it was about 400 pages long.  I made it through all of the chapters that applied to us pretty quick. I want to continue to learn more and spread awareness.  

I think about what may have happened if our dermatologist didn’t recognize my son’s hand rashes as a pretty good sign of JDM.  After all, his pediatrician seemed to believe eczema was what all my fuss was about.  I have read so many stories about children who had signs for up to 2 years before learning it was JDM.  We had no idea for about 7 months. Mean while, I had no idea the sunny places he loved to play beamed harmful rays on my baby making him sick.  

I joined the CureJDM Community that night.  With such a rare disease, I did cross my fingers and search for someone who lived in the same city as we do. Would you believe it?  I found another Mom to connect with.  I even found events planned across the United States to bring families and children living with JDM together.  

Even more amazing, a friend contacted me the other day to let me know that one of her family members was diagnosed with JDM at 3 and is now a healthy 20 year old in remission.  This gives me hope.

Things have been a little hectic. I can’t wait to meet these people.  It really does help to know that there are people I can reach out to. With so much uncertainty, I’m thankful for the little sprinkles of hope and the people God has placed in my path recently.