New Google Group for 40-and-under Young Adult Patients with Neuro Immune Disease

[mojoey]

Dear everyone,

I just wanted to announce that I've opened up Healkick, a new google group for 40-and-under young adult patients with neuro immune disease (ME/CFS, chronic lyme, fibro, MCS, mold illness etc.)

There has been a need for support dedicated to this demographic of patients for quite some time now, and personally I would have loved to have a central destination where I could meet other patients near my own age that could relate to how this illness affects our particular generation. I waited 5 years for something like this and it never showed up. The bull has horns to be grabbed, not to be horny.

Please join us at http://groups.google.com/group/healkick. Click on "apply for group membership" on the right side. You will need a google account to join if you don't already have one.

Also, please support our effort by "liking" our promotional facebook page at http://www.facebook.com/#!/pages/Yo...Chronic-Lyme-Fibromyalgia-etc/183809648306533

All my best,
joey

 

[valentinelynx]

Why under 40?

Just curious. What is it about the age of 40 that would make a distinct group with specific issues? I was 31 when I got this thing, almost 18 years ago. I still have the same issues now as I did then. I do get the desire to relate to one's peers, but that group may be broader than you think. Or narrower? Maybe you want to talk to people who would be just getting started with being adults? If you sign up for the group when you're 38, should you quit 3 years later? Sorry, don't mean to be a trouble-maker. I just was honestly puzzled by the idea, given that people with this disease tend to live with it for decades. And I still consider myself a "young adult" at 49! Maybe just immature...

 

[mojoey]

Hey valentine,

Thanks for your feedback! As you can imagine, this "age" issue has been the most controversial and toughest part of creating this group so far. The concept of "age" in neuro immune diseases seem to be completely warped, so a 20-something like myself may end up "socializing" online with a lot of older folks because the isolation and suffering is the same whether you're 27 or 57 with this illness.

The creation of this group came about because I always wanted to find another patient near my age and was never successful no matter how hard I looked. Instead, it was always due to chance that I met younger patients. The age limit of this group is not meant to imply a 41-year old patient is no longer young or that a 39-year old patient is automatically young (I am in no place to make such a statement, and neither is anyone else) but rather to have some kind of format that increases the chance of younger patients being able to find each other

Also, please understand that I do have broader visions for patients-meeting-patients than just this google group. This is just somewhere for us to begin. The last thing I want to do is alienate any patient from any demographic, so I hope you understand that it not my intent.