Alexandra’s Story of Hope
Alexandra grew up in Philadelphia. At 8 years old, she was diagnosed with juvenile dermatomyositis. Her first symptom was pain in her cuticles whenever she would touch something. Then came the rash, weakness, painful inflammation, and a host of other symptoms. Her strength and mobility were heavily impacted. She couldn’t bend over to pick things up. She couldn’t lift a brush to her hair. She couldn’t even sit on the floor with her legs crossed. Her speech was hard for some to understand due to inflammation and weakness in her throat muscles. Daily activities were painful, and her mom would regularly wash her hair for her. But during her over 13 year long battle with JDM, the rash would be her main symptom.
Alex’s treatment was long-winded. She took Prednisone from ages 8 to 20, regularly receiving oral steroids and IVIG and IV steroids. She didn’t stop IV treatment until she was in college, and a port was placed in her chest because her veins were giving out from the years of needles.
JDM is isolating for children. It doesn’t make you feel like a normal kid. To be known and loved in the midst of the struggle is what gives hope and dignity to those fighting JDM. Alex was lucky to find that in her best friend Caitlin. Since they were little, Caitlin has stood by her side with support and care.
“She always stuck up for me in elementary school during the tough years when kids weren’t so nice.”
Alex credits the combination of all these people as the source of her hope and encouragement, and their community was essential to her developing a fighting spirit and competitive edge.
Thankfully, Alex has been fully medication free since she was 23 years old. Since then, she’s had virtually no symptoms. During the journey and in the long overdue period of relief, her ambition and strength have carried her far. She studied psychology and biology for her undergraduate years before attending graduate school, and she now works as a school psychologist, recently winning an Excellence Award from her workplace.
She ran her first marathon in November and is currently training together with her boyfriend Ryder to run another.
Her offering of hope is heartfelt, and it comes from the place of someone who knows firsthand how difficult this journey can be. Gratefulness for others and courage to see the good are tools Alex has harnessed. She now uses them to enjoy the life before her.
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