The story of Jessa
My name is Jessa, I’m 18, and I have multiple rare diseases with unknown genetic causes. One is Ehlers-Danlos Syndrome (EDS), a connective tissue disorder affecting collagen, with fewer than 200,000 cases in the U.S. My symptoms are widespread and unpredictable—heart arrhythmias, orthostatic intolerance, allergies, joint instability, migraines, chronic pain, and more. Though EDS is lifelong, I wasn’t diagnosed until age 12. As a child, my frequent pain and injuries were dismissed as “growing pains” or dramatics, even after being diagnosed with Dysautonomia at 9. My symptoms worsened into my teens with joint subluxations and dislocations, finally leading to my hEDS diagnosis. Managing EDS is challenging, especially since many doctors lack awareness, making advocacy essential.
I also have a rare autoimmune disorder—Mixed Connective Tissue Disease (MCTD)—which affects fewer than 50,000 people in the U.S. It overlaps with lupus, scleroderma, polymyositis, and rheumatoid arthritis, though symptoms appear gradually over years. Currently, I experience lupus-related light sensitivity and malar rash, along with Rheumatoid Factor-Negative Polyarticular Juvenile Idiopathic Arthritis, which affects multiple joints, including my knees, hips, back, shoulders, and hands. Balancing treatments for MCTD and EDS is difficult since they often conflict, but I’m managing with immunosuppressants and physical therapy.
Despite these challenges, I graduated high school early at 17 and started college as a sophomore. My illnesses took a lot—childhood experiences, horse riding, crafting—but not my education. I plan to pursue human rights and international relations, though that may evolve. Sharing my story is important to show others in this community that they are not alone. Stay strong!