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Jedi Tedi Creates Awareness for a Rare Disease: CRPS

News
26 February 2021
Complex Regional Pain Syndrome (CRPS) is a pain like you cannot imagine. Nobody can hug or touch you; it hurts too much. CRPS is the highest level of pain measured in medical science.
Health rare disease

Complex Regional Pain Syndrome can be triggered by slight trauma or a virus. The nerves are knocked out of synchronisation and become overstimulated, leading to non-stop messages of pain to the brain. This leads to a continuous cycle of pain caused by dysfunctional nerves in a joint. The nerves affect every part of the body; therefore, the whole body can be affected.

Symptoms of CRPS include:

Burning pain
Altered skin colour
Skin temperature changes
Smooth skin texture
Reduced movement


Every move is challenging: taking a shower, walking, carrying things... People walking towards you too fast or being too close to you, sitting and lying down, loud noises - all of these cause immense pain.

It is a pain like you cannot imagine. Nobody can hug or touch you; it hurts too much. CRPS is the highest level of pain measured in medical science. It is higher than the pain experienced when losing a finger - without anaesthetic.  A touch of a feather on the skin feels like a blow torch’s fire.

Many don’t cope well with CRPS as the extreme nature of the disease is misunderstood.

Being neurological, medicine alone cannot help. An inter-disciplinary team is required so they can determine the unique therapies needed to treat each individual as personality and family interaction form an integral part of recovery.

In 2016, I, Jed Kagan (then 10 years old) experienced intense knee pain.
 

This is Jed’s CPRS story:

X-rays and blood tests revealed nothing out of the ordinary and I was sent home. The pain escalated. It felt like my legs were on fire and there was no relief from pain medication. After three months of being bedridden, I was diagnosed with CRPS. In searching for help, we found Red Cross War Memorial Children's Hospital. Their pain clinic is one of a few institutions in the world that can treat children with CRPS. I was the 10th child treated in Africa.

We are lucky that our local hospital has taken the time and had the empathy to give us our lives back.

We met several families who had similar ordeals and we were inspired to create awareness for CRPS, as too many children are not believed or are misdiagnosed.

My family founded Jedi Tedi, our NPO that ensures that doctors and therapists know about CRPS. We make sure that we support the families so that they are aware of where to get help. 

We raise funds creating and selling unique 'Jedi Tedis'. These 'Tedis' are made with care and affection.  We send them to children worldwide who are going through their journeys of pain so that they know they are not alone.

As I say, ‘IF I CAN DO IT, SO CAN YOU!’


~ Shana Kagan (CEO: Jedi Tedi Foundation)