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KevinG

KevinG 4 months, 1 week ago on Crowd turns out for fundraiser held by local boy stricken with rare extreme-pain disorder

I wish young Timothy the best and hope he recovers quickly. As a long-term victim of this condition I can speak to the horrific nature of the pain associated with it. I was a Doctor of Chiropractic when a concussion from car accident induced the condition and ended my career. Over the last 15 years, I have learned a great deal about the disease and sadly, I must admit that this was information that I did not acquire in school ... unfortunately, this is also the case for many medical schools. The condition is not as rare as it may first seem, but a large number of victims go into spontaneous remission, often before a diagnosis is made and a second population will see remission after 6-24 months of intensive physical therapy and the use of a very wide range of drug therapies. While it is true that at present there is no cure, there is a great deal of work being done on many promising medications.

To Timothy and his parents, I would like to say, "Do not give up hope!". The story didn't say how long Tim has suffered with this condition, but by now, through information provided on the RSDS website, you should be aware that there is still hope for a spontaneous, or therapy assisted remission, especially if his injury was within the last 12-24 months, as mentioned above. If it has been longer though, know that those times are not written in stone; there are many remissions that take place even years after CRPS rears its ugly head, but that range is when the greatest number of remissions are seen.

Tim, you have a great deal of work and, unfortunately, pain in front of you ... but, you are young and an athlete and those are both in your favor (athletes know about hard work and pain!). To Mrs. Lucid I can only say stay strong for him and be his advocate, make sure the doctors and therapists are pushing him hard and doing all the research they need to do to get him the very best forms of therapy ... there is, as I said, much to hope for. I would also recommend looking into the many groups that help support and supply information for those with the disease and those who support them.

I'm sorry when I hear of any youngster struck with CRPS, but this story presents a nearly ideal situation if it has to happen ... a family, friends, and community all working to support a good, hard working kid who has a terrible, painful disease, one which, unfortunately, is all too often misdiagnosed, undiagnosed, or disbelieved ... I applaud the paper for telling his story, and all of Tim's supporters for their efforts and caring. Best of luck Tim.

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