The story of Jamie
I was diagnosed with Primary Erythromelalgia (EM), a rare and painful disease, in the spring of 2012. Erythromelalgia is a rare neurovascular condition that most commonly affects the feet, but may also occur in the hands, face, or other parts of the body. It causes severe burning on the skin. Over the years I had learned to manage my symptoms, thankfully the pain was limited to my hands only. I learned to avoid triggers and see the signs of an incoming flare. Things were under control! I was independent, active, and thriving! But then came June of 2023. All of the sudden, my EM had spread and become WAY more intense. My feet, face, ears, neck, and chest were all now victims of this disease. It was not a fun time. Erythromelalgia is also known as the “Man on Fire” Syndrome, and I can testify that name is very appropriate. Burning, swelling, reddening, fatigue, overheating, blistering, pain. EM is no joke, and, unfortunately, the treatments are not a one-fix-all. I have yet to find a treatment that helps, but I pray one day that will change! Research is being done (thank you Mayo Clinic!) and I’m hopeful for a solid treatment plan at some point in the future. It’s now February 2025, and my life has changed so much. I’m a wheelchair user, unable to work, dependent on family, limited in my abilities, and still living with severe pain. Sometimes it really sucks, and for a while I let the depression and self-pity control my life. But something I’ve learned over the last (almost) two years, is that I am not my disease! My disease doesn’t have to define who I am, it shouldn’t define who I am. I am Jamie: a Christian, a musician, a friend, a daughter, a homemaker, a hockey fan, a church member, a lover of all things happy and cozy, and so much more. I am limited in ability and live with a condition that I wouldn’t wish upon anyone, yes. But in the midst of it, I have joy and hope. I am comforted by my God, and loved and cared for by my friends and family. This is my story