My name is Jed Kagan and I am 13 years old. In 2016, after sitting down, I tried to stand up and screamed in agonizing pain and from that day, my life changed forever. My pain increased daily and many tests were done with no conclusion. After 5 weeks of constant pain, a paediatric specialist recognised my symptoms and suspected Complex Regional Pain Syndrome, a disease he had never seen in his 50 years of experience. A bone density scan confirmed it. Symptoms include excruciating pain, altered skin colour, skin temperature changes and the skin becoming thin and shiny. This disease starts by the nerves in the joint going haywire and sending a continuous pain message to the brain
CRPS can spread and children do suffer from full body CRPS which can leave them completely debililated. CRPS affected my left knee and I was unable to touch my leg for many months. It is a pain like no one can imagine - the highest level of pain measured in medical science. A touch of a feather on my skin felt like a blow torch fire.
I was traumatised thinking that no one could help me. I took 32 pills daily which made me anxious. After many dead ends, we were directed to Red Cross War Memorial Children’s Hospital and were relieved that their pain clinic had seen this disease before. We soon realised that Red Cross, here on our doorstep, is one of the few hospitals in the world that have the knowledge to treat CRPS.
I became the 10th inpatient treated for CRPS in Africa and we have since guided 11 local CRPS families to their recovery. There are too many children who are told they will never walk again. This made me feel it was our responsibility to raise awareness about CPRS. After I recovered, I made it my mission to start a Non Profit Organization to fulfil our promise to these children and to ensure that they get the help they deserve. I strive to educate others about this complex disease and to raise funds for the pain unit at Red Cross which gave me back my life and body. I do not want children to be misdiagnosed, not treated or not believed at all just like I was.
I send Jedi Tedi Care Parcels all over the world to CRPS kids, to remind them they are not alone on this tough journey and that I am shouting loudly for them to be treated and for CRPS to be recognized as a treatable disease.
Jedi Tedis are a beacon of hope for children to know that they are not alone. We have donated 1000s of Jedi Tedis and we know that these children are reinforced by our mission of instilling hope that they CAN get better.
As I always say… IF I CAN DO IT SO CAN YOU.