My name is Ella Eisenreich, I am 15 years old and I have Juvenile Dermatomyositis (JDM).  JDM is a rare disease that affects about 3 in a million children each year.  This is an autoimmune disease that causes both muscle and skin inflammation.  Patients with JDM may experience rashes, weakened muscles and inflamed soft tissues.  This is a very tricky disease to diagnose and treat as each person experiences different symptoms.  There is no cure for JDM.  Most doctors do their best to look for symptoms that could relate to other diagnoses to determine how to treat with medications.  Many of these medications come with severe side effects which are often similar to cancer treatments.  And of course, these medications and treatments do not always take the pain away.  There are some JDMers who kick their disease into remission, however, this does not come with a life guarantee it won't return. 

In my case, I am fortunate to have a mild/moderate disease activity.  I was diagnosed over 3 years ago after many doctor visits, blood draws and other various tests.  For some children, they are diagnosed after one difficult episode.  Treatment almost instantly begins after diagnosis.  My course of treatment started with just one medication, which lead to now several medications daily.  As of now I take about 6 pills each day (I have gotten really good at swallowing pills).  In July of 2020 I attempted an IVIG treatment with the hopes to decrease disease symptoms which were flaring.  Unfortunately, this was unsuccessful.  After several trips to the ER, I was diagnosed with Aseptic Meningitis.  I have had a few other complications with medications over the years some of which cause brain fog and severe digestive issues. 

Having JDM often limits normal daily activity for myself.  I wake each morning with lots of aches and pains in my hands, legs, and other joints.  Mostly my hands are so swollen it is difficult to make a fist.  This is accompanied by pain and stiffness throughout.  Once I get moving, I start to feel ok.  Being an active runner and former soccer player, the doctors often feel it helps to keep my disease quieter than most.  Exercise is important to me and has allowed me to avoid major spikes in symptoms.  Often, children with JDM can barely walk or stand.  Many younger children have severe cases and worse situations.  It would be great if these children could feel normalcy in their lives.  I am not sure the last time I felt “normal” was, but I wish for one day all kids with JDM would be to get up and move and feel normal.

I am fortunate to mostly be able to carry on with my daily activities the best I can.  I believe that with the support from the CURE JM foundation we can raise awareness for all patient with Juvenile Myositis diseases.  As a member of the JDM family I ask for your support to give kids, like me, something to be excited about as we move closer to better treatments and hopefully one day a CURE!

How can you help?  Join me and my family on July 4th at 9:30AM as we rally together and Walk Strong around our neighborhood.  Wear your favorite Red, White and Blue and get your legs moving so that one day all kids with JDM can too!  We will have snacks, beverages and music of course.  Set a goal for how many laps, and if you feel up to it go ahead and jog a little!  Its my favorite thing to do:)  If you feel moved go ahead and follow the links attached and make a donation!  I am hopeful to one day be medication and pain free with the support and research of the Cure JM Foundation!

Gifts will be matched by the Leetz Family Match.  Every dollar makes a difference and gifts will be put straight to work to advance research for better treatments, better care, and, ultimately, a cure.

From the entire Eisenreich Family, THANK YOU!!!!