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20 years and counting


Greg111
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Hello. My name is Greg. I was watching a Netflix show called Afflicted and it brought back some bad memories. I suffered from CH from the age of 26 for about 17 years. I have been pain free for 20 years now. I am surprised to see how little has been done by the medical community in the last 30 years. I was not diagnosed with CH for the first 10 years...everyone thought I was crazy and I was beginning to believe them. Just thought this may give someone a little hope, especially if they are in year 16. You can get through this ....I did.

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CH is quite rare and not very well understood, even by the 'experts'. It takes publicity and funding to get more doctors and scientists involved in finding a remedy. We need something like the ALS Ice Bucket Challenge - which I couldn't do because cold is a cluster trigger for me!

Until then, we have to be our own scientists, doctors and test subjects. 

I believe where the medical community lets down the most is in not being able to diagnose the condition quickly, and to provide the most basic abortive options. 

MG

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