Raising Awareness For CRPSKidz Will Roberts Weekly Telegram

Raising Awareness For CRPSKidz

Posted by admin on Jun 26, 2013

Sandy Boone, Freelance Advocacy Journalist

Will Roberts Weekly Telegram

Griffin Winn is 16 and has CRPS/RSD, Patella Femoral Syndrome and POTS since 9/20/2011. (CRPS stands for Complex Regional Pain Syndrome and RSD stands for Reflexive Sympathetic Disorder. They represent a Neuromuscular Disease that affects the skin, muscles, joints and bones; his pain signals are misfiring and they tell his body that it is in 24/7 pain – higher than that of cancer or childbirth; CRPS involves the internal organs which result in sleep paralysis; hypersensitivity to medications, sounds, smells, and sunlight). His goal is to continue walking without support, keep the strength up in the leg to avoid atrophy and to manage his pain without medicine. Surgery is out of the question unless it’s a life or death situation – until a cure is found (surgery could cause the disease could spread to the other limbs. He did have Sympathetic Lumbar Blocks and the CRPS is now affecting his spine). Instead of taking medicine for his pain, he has been taught pain distraction strategies through Boston Children’s Hospital. He was accepted into their 6 week Pediatric Center’s Therapy Program at the Waltham’s PPRC Center on coping with CRPS pain and walking without support (limited walking without the use of a wheelchair or cane). Because of bone bruising, his therapy is modified and he is not allowed to bend his leg more than 45 degrees, no skipping, no running, no jumping, no riding his bike. He has to count his steps forward so that he can return without injury to the knee. This disease greatly affects the lives of many children – especially those awaiting a cure for surgery.

*CRPS can follow an injury as minor as a sprain, a tick or dog bite, giving blood, immobilization after a surgery, even after a heart attack or 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.






“I can do all things through Christ who strengthens me.” Philippians 4:13

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.


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