Comment by panuelo girl on June 19, 2009 at 12:32pm

I think you have to remember that support groups can be scary to many newly diagnosed people. It sounds counterintuitive, b/c you'd think that's when people are most in need of support. But I think a lot of people think it will go away on its own and are looking for the magic pill/solution and don't want to see people who've lost all their hair or who have experienced it for a long time w/o much improvement. Give it time, be patient, and remember that if you help one person it's a success. Keep aiming to reach one person (Christine?) and eventually word will get out. Maybe arrange a derm to come talk about it or have a specific topic or do something fun like a picnic. I know it's frustrating, but I do believe you'll get there!

Comment by Tracy on June 19, 2009 at 12:35pm

Oh we've tried, and I've been trying for a year. Its the fact that every time I meet someone who has a child with it, we want to meet then they stop emailing me. I just don't understand it. Its important to my daughter and its important to me. Maybe it is scary but if parents cared at all they'd try to support their kids, and acknowledge what they have rather than hiding from it. What good is that going to do?? Teach your kids to be ashamed of it??? I just don't understand. These kids should know they are not alone and not feel like they have to hide. I know what it does to ones emotional well being, and self image... and to think that all these people just decide to stop contact just irks me. I will never ever understand. Brittany was SO EXCITED to meet this little girl, and now her mother is stopping it from happening.

Comment by Joshua on June 19, 2009 at 1:09pm

Hi Tracy,

I'm sorry to learn about your situation. It can be very frustrating, some people just couldnt be bothered much with alopecia, and I was told that some people are even "disgusted" with the idea of meeting other alopecians, some people attended their first NAAF conference, reacted negatively and vowed not to attend it anymore.

I'll try not to judge but there will always be some people with a "weird" attitude towards alopecia. Many mixed up with the definition/concept of acceptance and ended up to be self-denial.

My opinion (not saying that I am right), I dont lock myself in the room and cry everyday until my hair grows back, I am happy to talk about my alopecia, I would love to meet and have alopecian friends and NOT ONLY alopecians. I am happy to support and spread alopecia awareness, I am not pressing or hoping that everyone in the society should abandon their hair and shave their heads, I feel sad when people make stupid comments about my baldness...and I try to be open minded to all issues...that to me is more like acceptance than being self-denial.

To reach acceptance for alopecia areata, doesnt mean that you have the deny the need of support and friends with similar conditions....

Hopefully days ahead will be better...perhaps its time to look beyond Winnipeg and for that I would like to extend my invitation to you and your family to visit my home one day. I am already expecting a family or two to visit my country who would be flying from more than 20,000 miles next year....

take care and God bless. If Winnipeg alopecians doesnt want Brittany, just remember that so many in the rest of the world would be blessed with a friendship with Brittany, she will never be alone...never!

jt

Comment by Tracy on June 19, 2009 at 1:54pm

Thanks JT. Its jsut so frustrating you know? she finally thinks she is going to meet another little girl with it here an they decide to not contact me anymore? I just don't get it. She has penpals in Canada, but it would be nice to actually meet someone. Just not fair to her. People think there is something wrong with her, they have no idea what Alopecia is and that gets me! I knew what it was. I knew by her first bald spot exactly what she had. i was self aware thanks to TV and an understanding human emotion.

I guess it just get me angry/upset that my little princess is being treated differently, even if its not openly said to her. the ignorance is obvious.

Comment by Diane on June 19, 2009 at 4:36pm

Hi Tracy,

Just my 2 cents about the support group: when I lost all my hairs, the last thing I wanted to see/meet was others like me.... sounds weird, doesn't it? I just did not want to be like *these* people.... this was 7 years ago... I went to my very first support group meeting 2 years after my hairs has fallen (so 5 years ago) but then did not attend any meeting until last year, I went to our local meeting in May 2008 and to the NAAF Conference in June 08.... now, I'm organizing event in MTL and I'm part of the 'executive' comitee of the 'Fondation Québécoise de l'alopécie aréata'....
Acceptance does take a while.
Do not give up!
Love,
Diane

Comment by Carol on June 20, 2009 at 3:11pm

Just a suggestion, visit my webpage (which I've put a link to on my profile page) and think about going to the Canadian Alopecia Camp this summer. You might bump into someone else from around where you live but if not, at least she'd have the chance to meet other kids with alopecia and see adults with it too! There aren't many support groups out west (I don't get it either) but Quebec and Ontario are getting into more and more these days. I don't know the details yet but there is a group in Toronto which is starting CANAAF (Canadian Alopecia Areata Foundation) so just be patient, things are changing - and always for the better! :D

Comment by Tallgirl on June 21, 2009 at 12:56am

My relatives from Canada lived in a community of Europeans who didn't want their medical conditions to become gossip fodder...could that be the case in other parts of Canada?

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