It is often a sudden, traumatic and deeply-personal experience that propels one into a more meaningful and purposeful life.
A life changing moment can at once challenge us beyond our limits, and drive us towards activism, thought-leadership, community building and advocacy. We can suddenly find ourselves committed to a cause, of which we previously knew very little.
This was my experience. I’m an estate agent from Sea Point, and together with my family and my son Jed, we founded an NPO called Jedi Tedi. Our NPO works to inform the world about the rare medical condition of Complex Regional Pain Syndrome (CRPS), as well as creating a support system with other families experiencing this trauma. This is our story.
In 2016 our son Jed (10) sat down, and when he stood up he screamed in agonising pain and our lives changed forever.
Jed’s pain elevated and tests were done with no conclusion. Eventually a paediatric specialist recognised Jed’s symptoms and suspected Complex Regional Pain Syndrome (CRPS), a disease he had never seen in his 50 years of experience. A bone density scan confirmed this diagnosis. Symptoms include excruciating pain, altered skin colour, reduced movement, skin temperature changes and the skin texture becoming thin and shiny. CRPS can spread and children worldwide suffer from full body CRPS which can leave them immobile.
It is known that family and friends do not cope well with CRPS, as most do not understand the extreme nature of the disease. It is a pain like no one can imagine — the highest level of pain measured in medical science. A touch of a feather on the skin feels like a blow torch fire. Living with CRPS was challenging, we become housebound.
Jed was suicidal and traumatised as he thought no one could help him. The 32 pills he took daily caused anxiety, which is another symptom. We were assured however that children have a good chance of recovery because children’s nerves are elastic. Eventually we were directed to Red Cross War Memorial Children’s Hospital and were relieved that the pain clinic had seen this disease before. We very soon realised that this hospital, right here in Cape Town, is one of the few hospitals in the world that could help us.
Instinctively we knew that we had to let Jed travel this journey on his own. He started with an infusion which helped his nerves regain their direction. His pain levels went from a 10 to a zero in 4 days. He was given goals to achieve to conquer this disease. These kids have to be brave. They endure what most people never have to experience in a lifetime, as they struggle to take back their bodies and their lives. This is so difficult to communicate to families and to specialists.
We expect medicine and pills to treat our diseases, but with this complex disease this is not the case. The patient has to meet it halfway. A positive frame of mind is half the battle won, and it is this learning that we share. Jed became the 10th inpatient treated in Africa and we have supported 11 additional local CRPS families since Jed’s recovery (excluding international families).
The approach in which the pain clinic excels is that they read into our children’s personalities. They then work with each child as an individual in their pain management regime
This holistic approach has helped our children. There are too many children who are told they will never walk again when diagnosed. This made us feel that it was our responsibility to raise awareness about CPRS.
Jedi Tedi reinforces our mission of instilling hope. We encourage families to realise that they must carry on fighting and not solely rely on the medical fraternity. We support others going through their CRPS journeys through our Facebook and WhatsApp support groups, where we encourage hope and healing. As Jed always says “If I can do it, then so can you!”
My message to you this month of July — Madiba’s birthday month — is to not wait to do good. You don’t have to look far to find a cause that speaks to you. To offer a small amount of your time, empathy, positive energy or money — and I guarantee — you’ll get back ten-fold what you give.
Words by Shana Kagan