Humans of Rare Disease
Welcome to Humans of Rare Disease
This collaborative effort features people in the rare disease space: patients, advocates, researchers and healthcare professionals alike. We have encouraged them to share their stories and offer readers a window into their lives. Enjoy and share!
Check out our Rare Disease Community Below!
My name is Michelle and I have an autoimmune neuromuscular disease called Stiff Person Syndrome. It’s a progressive disease that causes stiffness, and painful muscle spasms all throughout the body, with my legs and arms twisting and my feet contorting. I struggle with mobility, and often have trouble walking, but I’m on a treatment that helps! It took 7 years of painful episodes and frustrating hospitalizations to get a proper diagnosis and treatment. I went through a lot of trauma and pain in t...
Stiff Person Syndrome