What are the best foods for my child with JM? How do we handle the steroid cravings? How do we eat healthy with all the side effects of the medications? What about a gluten-free diet? Anti-inflammatory diet? Are competitive sports safe for my child? Are there exercises my child can do to improve their outcome? In this interactive session, we will talk about how to apply the nutrition and exercise recommendations sometimes provided by healthcare providers and make them work for your family in the ‘real world.’
UNDERSTANDING TREATMENTS AND SIDE EFFECTS TOWN HALL RECORDING
Join Megan Curran, MD, and Hanna Kim, MD to learn the following:
Immune system overview, steroids, and other medications
How medications work, and the side effects of those medications
Current & future treatment strategies
Sun protection, physical therapy & exercise treatments
WARRIOR ABBY'S STORY
Abby during her battle with JDM
"At the age of two, I was diagnosed with Juvenile Dermatomyositis (JDM). My parents first noticed something was off when I wanted to be held constantly and I kept telling them, "my knees are bending." I started having trouble walking up the stairs, turning a doorknob, brushing my hair, and doing the things a normal toddler should be able to do. I developed a rash on my face, hands, knees, and elbows. By God's grace, we found the right doctors who diagnosed my disease quickly.
I started treatments right away and began a journey that would last 13 years. I remember having a muscle biopsy, getting MRIs, going to doctor appointments, getting my blood drawn, getting IVIg infusions, and taking every precaution to stay out of the sun. I took prednisone, methotrexate, folic acid, plaquenil, and other medications I'm probably forgetting. I also got IVIg infusions.
Abby today.
When I started kindergarten, I began to struggle with the social implications of having JDM. I couldn't go outside for recess like the other kids.
There were times I would be in tears, begging my classmates to stay inside with me (and I don't blame them--what kid doesn't want to play outside!). Thankfully, a classmate and dear friend of mine who had cerebral palsy usually stayed inside with me. We are best friends to this day!
To avoid the sun I used a parasol, wore long clothing, wore big hats, and sat patiently multiple times a day to get sunscreen reapplied. I also had to miss school to get IVIg infusions and go to doctor appointments.
To regain my muscle strength, my doctors suggested that I start swimming. The sport was easy on my joints, was inside (so no sun to worry about!), and provided me with teammates to connect with.
My life as a JDM kid was much different than my peers, and tougher in some ways, but my experience wasn't all bad and has made me who I am. I wouldn't change a thing.
Over the years I gradually got healthier and was slowly able to come off my medications. I also excelled in swimming. I qualified for district and state championships multiple times!
At the age of 16, I was told I was in remission! I was in high school at this point and started to think about the career I should pursue. I loved the sciences and wanted to use my personal medical history to help others. The Physician Assistant (PA) profession stood out to me, and I was accepted into Gannon University’s PA program out of high school.
In undergrad I devoted myself to my studies and also competed in swimming as a division II athlete. I swam distance events like the mile and qualified for PSACs, our conference meet (who would've thought I would go from not being able to walk up the stairs to this!).
I say all of this because my parents and I never knew if I would be able to do these things when I was diagnosed with JDM.
I am currently in the graduate phase of my PA program, halfway through clinical rotations. I am still discovering what medical specialty God has planned for me, but I hope to use my story to better partner with my patients, give them hope, and provide them with the same great healthcare I received.
It breaks my heart to see others with JDM struggling, but I hope I can serve as an example that remission is possible.
My advice to other warriors and families is to never lose hope.
Be thankful for the good things and people in life because negativity doesn't add a single moment to your life.
Lean on others for support and seek community with other warriors. Share your story to raise awareness about the disease.
Encourage others to donate to Cure JM so we can discover new treatments and one day find a cure.”
– Abby
P.S. Update: Abby completed her clinical rotations and she will start her career as a Hospital Medicine Physician Assistant later this fall!
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