Xenon research

Don’t know if everyone had heard about the genetic study that they’re doing on EM. But I was eligible, applied, and I was accepted! Sent my saliva sample in and am now waiting on the results. If it’s hereditary I can focus more on pain management, but if results come back showing no reflection of EM as a gene mutation in my case, I will be exploring alternative causes. They’re still accepting applicants until December, if anyone is interested in free genetic testing.

http://www.livingwitherythromelalgia.org/forum/topic/show?id=6418999%3ATopic%3A45963&xgs=1&xg_source=msg_share_topic

I will keep anyone updated who wants to be, and if anyone has questions just ask.

Yes, heard of it, was accepted, sent sample about 1 month ago. Like you, waiting impatiently for results and hoping for no reflection of gene mutation… Good luck! Keep us postec when you receive your results!

Thank you so much Peyton for reminding everyone of this. Xenon are most definitely recruiting for the study until December 2014. Whether you know you are primary, or think you might be secondary - just apply. Its worth it as totally free!.

Good luck from the mod team

Hi Peyton,

I too applied and was accepted and am awaiting my genetic results. I'm not sure if I have previously mentioned this or not. My apologies if I haven't. I have been waiting for my results for over a month now. I forgot how long they said it would take but I want to believe it was around 6 weeks.

It is almost exciting to get the results. For one, having confirmation of your disease (if results show hereditary) because no doctor can deny it and also knowing what to focus on. It will definitely be a relief. I look forward to hearing your results and next steps.

Best wishes, Kay

I too was accepted and they said it would take 3 or 4 months to get results. It's 3 months so far. Just 4 weeks to go.

Jeffrey

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I had it all wrong. I was incorrect about how long it would take (couldn't remember). That would explain why I haven't received my results yet. Thank you. It looks like I will be waiting about another month.

I could have swore that they said 3-4 weeks but I don’t mind waiting as long as I get to find out eventually

Regarding the Xenon gene study, I'm curious to know how many people who applied were approved? Is anyone getting denied, or do they seem to be accepting everyone who applies? My symptoms seem quit milder than some of the posts I've seen here, so I was honestly surprised to have received an email saying I was approved for the study. Can anyone confirm that this is a valid study being used for the purposes it states? I know I'm probably being quite skeptical, it's certainly in my nature to be so.