Support group for younger EM patients?

Hi there! I’m new to this community, and apologies if this isn’t the right place to ask this. I’ve had EM symptoms since age 9 and was finally diagnosed this year at age 21. I’ve been looking for some kind of support group for young people with EM (roughly high school/university-aged). Can anyone point me in the right direction?


This is really the only support group I’ve found but there are some of us who are younger on here! I’m 21 myself with EM, hopefully someone can point you in the right direction but if you ever need to chat hmu!

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No matter your age, this is an all inclusive group. We all endeavour to help each other. This is the group for you :smiley:.
Hopefully, you can benefit from those of us who have been suffering with this diagnosis for years!
I am shocked that it took so long to diagnose you.

It took a long time for my diagnosis as well. I had to take pictures during a flare and show them to quite a few drs. None of the drs seem willing to treat me. One actually said try low dose aspirin and if that doesn’t help oh well. I’ve found some facebook groups that are helpful as well. For some reason they are easier for me to navigate than this page is.

I don’t know of any such forums but I think it would be a great idea. I do feel that many of the active users of Living With EM are older, and may not be able to appreciate as well or have advice regarding some issues that we encounter as young people with EM. For example, how to deal with EM and\or medication side effects while having to study and do assignments (have to write while having a flare, not sleeping alongside academic stress), support dealing with the hindered social life etc.

I am 23 by the way! Still a student (graduate)

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There are some younger folks on here, myself included. I’m 26 and in medical school so you’re not alone. A little older than you but my EM came on at 23.

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