October 2, 2019

In the many times I have spoken to moms with kids affected by this very strange and insane disease I find it strange how difficult it is for us to go beyond living without the pain.  It is so difficult to let it go, to give it up ...it defines us as people, as families...

October 2, 2019

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,...

January 17, 2019

Our pain clinic go full on to change the mind set of the fear of CRPS and most of the kids may get 1 flare...a few struggle a bit after the treatment...but most never have a flare again. I so wish other hospitals would contact them to learn how they do it. But it is th...

December 24, 2018

I am totally devastated and now even more passionate to carry on with my
initiative for CRPS awareness in children. Our Jedi Tedi foundation, which
we started when my son Jed was diagnosed with CRPS and we eventually found
that the  Red Cross War Memorial Children's Ho...

October 25, 2018

Jed who was 10...is now 12..Sat in a chair...and then just could not get up...no pressure on his leg for months...no diagnosis on any tests...all normal...we went to this 80 year old pediatrician who had heard of the disease ...called it Sudeck...which is CRPS original...

September 18, 2018

Hello, we thought you may like to have an update on our LATEST Jedi Tedi happenings.

Jed and I attended 3 schools in Johannesburg two weeks ago, and Jed told all the teachers and pupils about how he felt during his journey with CRPS, we are aiming to create awareness fo...

August 23, 2018

I was not going to post about this as it is a very difficult time for our family but I have decided to post because knowledge is power and if Heathers story can help empower another family or person then that will be a good thing. Heather was recently diagnosed with a...

August 22, 2018

"Dear Jedi Tedi

Shana and Jed, you have done such amazing work with Jedi Tedi and with raising awareness for Red Cross War Memorial Children’s hospital Pain unit.

We are continuously stopped by our medical professors and other disciplines all saying “well done, did you s...

August 6, 2018

I am not sure if you know who I am...so let me introduce myself. My name is Shana Kagan and my son Jed, who is now 12 had CRPS when he was 10. He was admitted to Red Cross Children's Hospital for treatment and in a few months following his inpatient Ketamine infusions...

July 30, 2018

I feel that these CRPS kids need a voice and us CRPS mothers need to be heard, because I feel that we are the only ones that actually know what our children went through and what it felt like and the absolute horror of the unknown. Lucky we were that we were directed t...

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