Raising awareness of CRPS

Raymond, Jed and Shana Kagan with Sister Angeline Schrikker at the Red Cross Children’s Hospital

Jed Kagan has what is known in medical terms as CRPS, or Complex Regional Pain Syndrome.

Every move Jed made was challenging; having a shower, walking down a passage, carrying a school bag, having people walk towards him too fast or even being too close to him. Imagine if daily tasks such as brushing your teeth, sitting, or even lying down all caused you excruciating pain?

There are a lot of triggers for CRPS. In Jed’s case it was a virus that lodged in his knee. The virus caused the nerves to get stimulated, which led to abnormal impulses along the nerve paths. The nerves affect the blood vessels, the skin, bone, nerves and tissue, which means that the whole body is affected by this disease. Thus begins the continuous cycle of pain.
It is a pain like no one can imagine. No one can hug you or touch you because it hurts so much — it is the highest level of pain measured in medical science. Higher than the pain registered when losing a finger when not under anesthetic. CRPS is measured at 45/46 out of 50 on the McGill pain scale. A touch of a feather on the sore skin feels like a blowtorch.

Jed went to six doctors before they diagnosed him, and the doctors at Red Cross Hospital said Jed had actually been lucky as he is the earliest case they have ever seen. He was bedridden, unable to attend school or play any sport or play with his friends. He took 32 pills a day, sat in doctor’s rooms for many hours and gave up a lot of what would be considered a normal childhood. Fortunately, we were channeled in the right direction and found the Red Cross Children’s Hospital.

The hospital put us in touch with other families who had gone through the same thing, and we can’t stress enough how much support these families gave us. We realised that we were not alone on this journey.

The day eventually came for him to be admitted to the Red Cross Children’s Hospital and after a week of Ketamine infusions Jed was finally relieved from his excruciating pain. Red Cross Children’s Hospital was outstanding. The fact that all the doctors and therapists who made up his team have taken time to worry about the ten children in Africa who have suffered from this disease is a miracle.

Jed came home with no pain and had to learn to walk again.

We wanted to pay forward the overwhelming support from our community and Red Cross Children’s Hospital and we felt the need to do something to honour them and to show our appreciation.
And so the Jedi Tedi was born. They are hand sewn and made from socks as Jed longed to wear a pair of socks but could not. We decided to make one Jedi Tedi a day for a year, and to have them sponsored for doctor’s rooms and therapy rooms. Part of the funds raised are donated to Red Cross Hospitals Pain Clinic.

There was a sale of Jedi Tedis at Weizmann Primary School on 17 May and over 150 Jedi Tedis sold out in half an hour. We have already raised over R13 000 for The Red Cross Children’s Hospital Pain Clinic and have now entered our second phase of our donation collection cycle — we cannot stop now.


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