My name is Griffin and I am 16. I have been struggling with a disease called CRPS (RSD) for almost two years. CRPS is a Neuromuscular Disease which affects the skin, muscles, joints and bones. I also have Platella Femoral Syndrome [severe nerve damage in the knee and the cartilage is detached from the kneecap – the Dr. repaired what he could but I will need a cadaver knee replacement with cartilage built-in].
CRPS affects my entire body and I suffer from mottling, miss-firing pain signals that tell my body it is in 24/7 pain – higher than that of cancer/child-birth. I also have sleep paralysis; hypersensitivity to medications, sounds, smells, and sunlight; POTS (rapid heart-beat when I stand). The lightest touch/breeze, vibrations in the road and changes in temperature can feel like knives and burning fire inside my skin yet, the bones feel like they are freezing. Many compare CRPS to being on fire and ice at the same time! I am limited to what I can wear – clothes touching my skin, creates overwhelming pain.
My therapy is modified to keep my bones from bruising and my leg from atrophying. My goal is to continue walking without support & to cope daily with these symptoms through daily distraction methods.
*CRPS usually follows an injury as minor as a sprain, a tick or dog bite, immobilization after a surgery, even after a heart attack/stroke, and the pain is not in proportion with the type of injury that has incurred. This disease has been around since the civil war, but we still have no cure. Some veterans describe the pain as intense and hot – long after the wounds have healed.
All donations go toward my medical travel, treatments, research and increasing awareness for this disease. Thank you for your support!
CRPSKidz is dedicated to helping kids with CRPS by a commitment to share my adventure with CRPS. I hope to make others more aware of the pain associated with this disease and to be a source for other kids.