Jed Kagan

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, it may make us feel important, or maybe it takes hold of us and it wont let us go. I have to admit that when they told me at the hospital pain clinic that Jed was not chronic anymore, I so remember feeling sho

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, 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 excrucia