It is often a sudden, traumatic and a deeply-personal experience that propels one into a more meaningful and purposeful life. A life changing moment can challenge us beyond our limits, and drive us towards giving back and paying it forward. We can suddenly find ourselves committed to a cause, of which we previously knew very little.
This was my experience. I inform the world about the rare medical condition which I suffered from when I was 10 years old, as well as create a support system with other families experiencing this traumatic disease. This is my story.
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, our lives 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. Family and friends do not cope well with CRPS, as most do not understand the extreme nature of the disease. We all became housebound. I took 32 pills daily which made me anxious. We were told that children have a good prognosis because our nerves are elastic and can be realigned.
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.
They started with an infusion and my pain levels went from 10 to zero in 4 days. My nerves went back to normal. I had to achieve daily goals and I was nurtured by different therapists. I had to struggle to claim back my life and walk again.
We expect medicine and pills to treat our diseases, but it is not always the case. We have to meet it halfway. Red Cross kept reminding me that a positive frame of mind is half the battle won. It is this learning that we share with others worldwide who are going through their journeys of bravery.
I became the 10th inpatient treated for CRPS in Africa. 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 us feel it was our responsibility to raise awareness about CPRS.
We strive to educate others about this complex disease and to raise funds for the pain unit. We do not want children to be misdiagnosed, not treated or not believed at all.
As I always say, “If I can do it, so can you!”