Alopecia World
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Ottawa support groups/ research projects
Hi!
I live in Ottawa, Ontario and have had alopecia areata for the past ten years, give or take. I am 29 years old. It has never really bothered me much (except when I get them in really hard to hide areas - I am pretty into my hair/aesthetics.) Lately the pains you get when the hair is about to fall out gives me anxiety. I think it's that "No! Not again! How can I stop it? Oh my gosh my hair feels so weird. I wish I could stop it - this is so frustrating! I will never look like a normal person!" feeling. I think I just need to be more pro-active about it - is there any studies being done I can help out in in some way? What can I do to make my having this annoying condition a positive thing? How can I help research advance in this?
Thanks for any advice/help you can give me! :)
Jade
Replies to This Discussion
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Permalink Reply by Vicki on
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Hi Jade, I'm in Ottawa too. I am 44 yrs old and have AA, most severe in the last year, I shaved the last bits off in Dec '13. I have spots that grow in that I shave down every few days. The pains, that almost feel like a muscle pain are truly strange, sometimes it's about regrowth and sometimes it's about falling out. This is a great forum to meet people and hear their stories. Lots of opinions, things to try and above all support for a condition that many people don't understand. Stay strong.
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Permalink Reply by jade mcinnis on
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Thanks so much Vicki! The pains I get seem to primarily be right before the hair starts to fall out - so i can tell where i am about to go bald before it even happens. it is so anxiety inducing! It is really nice to find a place where other people have this and it feels a lot less overwhelming when I read what other people are going through. How long have you had it? Did it just get worse through the years?
Thanks.
Jade
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Jade, my alopecia started about 5 years ago. I lost all the back with a few spots around the rest. I went to get the steroid injections for awhile and the hair did come back. But, a couple of years later I had more spots, then regrowth on it's own. Last June the spots started showing up again, huge clumps lost, showed up on my pillow, the floor, the shower and by December there was hardly anything left. It became harder and harder to hide the spots. My ponytail which I used to only wrap twice with difficulty was now going around six times. I wore bandanas and headbands for awhile. Then it was time, it was harder to watch the hair fall every day, I didn't like my reflection in the mirror anymore. So I shaved it off! It was not easy but it made me more comfortable in the end. I don't wear a hat or scarf or anything at home or in the office or the food court. I haven't quite built up the courage to remove it on OC Transpo or at the mall. It's all a process.
How about you? How do you feel at work, outside, with your friends. Are you comfortable? I try to think about all the people that may be struggling with alopecia and just want to feel comfortable in their hairpieces, scarves, or completely bald. So I walk around and hold my head high in confidence. It has become a mindset and it really helps. I try to be positive and not spend every day wondering if my hair will grow back.
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This is a really good place to learn and find out what others are doing around managing their alopecia. So, welcome. :)
This is a great group in Canada
https://www.facebook.com/pages/Canadian-Alopecia-Areata-Foundation/...
This charity is solely to do with trying to find out more with regards to Alopecia and a cure
https://www.facebook.com/AutoimmuneAlopeciaResearchUk?ref=stream
and of course there is also NAAF, who are do work with regards to research as well as support.
Rosy
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Hi Jade, I live in Ottawa too. I knew I've had a problem for a number of years but only was diagnosed a year ago - I have scarring alopecia - aka Cicatricial alopecia. I still have some hair - my hairline is receding around my whole scalp. I used to have a small forehead but not anymore! I try to hide the hair loss as much as possible - I have all kinds of hairbands, hats, scarves, etc. I hate going outside without something on my head in case it's windy! My dermatologist prescribed all kinds of medications (including powerful steroids & immune suppressants) over the past year. Nothing has stopped it, only slowed it down. At Christmas I got so sick that I said 'that's enough' & I quit taking everything. I'd rather have my health & no hair than the other way around. I can see myself buying a wig someday but I've heard that they can be really hot (not sure I would be able to wear one in our hot, humid Ottawa summers!). I have only told a handful of people that I have this.
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Hi maried,
I am in Ottawa and also have Scarring Alopecia. I was hoping to touch base with someone/people with the same issue. I was really excited when I saw your location and that your alopecia was the scarring kind. I am also on the medication, creams, injection roller coaster. I am willing to try, but I don't think anything will reverse this condition, and much like yourself, there will be a limit to all the drugs I am willing to take. Are you aware of any support groups in Ottawa, or even in Ontario for scarring alopecia? I can still hide mine, but i had to switch my part to the other side to hide a big spot. I am not enjoying this journey.
I hope that you are doing okay with your hair, and that you have found a way to adapt. I am still researching. Hope to hear from you, and perhaps others with scarring alopecia.
Thanks.
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Hi there - no I don't know of any support groups in the Ottawa area. I have stopped seeing my dermatologist - she finally admitted that she can't do much for me anyway. There is no cure. The hair will never grow back. I will not take any more meds. She never suggested the injections though. What are they like?
I started wearing a wig to work everyday. And I have another one for the weekends. My hairdresser cut my hair really short and it looks okay to go like that at home. A friend of mine just told me that the Cancer Society gives out wigs to those with Alopecia. But I haven't looked into it yet. I got my first wig at Carolyn's on Merivale Road. Quite expensive! But it is a very good wig. My health plan at work will only cover a wig (up to 80%) if you are totally bald - so I didn't qualify. My hairdresser recently found a wig online and ordered it for me - it was only $27.00! The hairstyle is shorter but I'll definitely wear it occasionally. She has to trim the bangs first to get them out of my eyes.
I'm okay with the whole thing now. I figure so what if I lose all my hair - it could be a lot worse! Most of my friends know I wear a wig. Only a few co-workers know that I do - the rest never noticed any difference.
Have a great day - stay in touch!
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Hi Maried,
Your candid response, and your comments were so helpful to me, thank you for that. I am on the cusp of stopping all meds too, as I am still losing hair, so it doesn't matter. Maybe meds slow down the hair loss, but at what cost? Every drug has side effects. This is just a slight delay of the inevitable, by 3 months, maybe 6 months? Bottom line is I will still be completely bald. For myself, this started 3 years ago, and has really picked up in the last year. I also got my hair cut, 3 to 4 inches taken off, now hair is at shoulder length, I guess this is the first step as part of the plan.
I intend to be upfront about it with others, I won't advertise it, but like you, I already told friends that I have this stupid condition, and my close coworkers will know soon. It is part of who I am now, so that's that. No point worrying about it, so trying to move forward is the best approach. I make it sound like I have it together, but I am still very much struggling.
I am investigating wigs, there is one type of wig that they mold to your scalp, no lace or anything like that. I read that Toronto has a place where they make/sell these. When all my hair is gone, I plan to check it out, probably by next year this time. Until then, I am now shopping for wigs.
You had asked about scalp injections: they are cortisone injections to prevent the inflammation which causes my body to attack the hair follicules and create the scarring tissue which will make me bald. Administered every 3 months, they help as much, or as little as any other drug.
Anyways, have a great 2018! Stay warm in this crazy Ottawa cold snap.
Please keep in touch as you sound like you have the same journey and philosophy as me. It is very comforting for me to communicate with you. I hope you find the same.
Cheers.
C.
p.s. I think that I found a support group in Kingston, I just emailed them through CNAAF. Maybe there will be one in Ottawa at some point, people need human interactions as typing is so slow for information exchange.
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Hi C - hope you are well. I looked into that wig that is molded to the scalp too. It is extremely expensive (ie ~ $5000.00+). The one I bought from Carolyn's was about $900.
Did you get any reply from CNAAF regarding a support group in Ottawa?
Take care.
M
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Hi Married,
I did not receive anything, but when I have a bit of time, I will take a moment to investigate from CNAAF what it takes to get one started here. I have one friend who has a type of Alopecia and we meet once in a while. Great support, I learned tons from her.
I would not mind helping out to help others and offer support, even if it is an informal meeting at a library, or a coffee shop or something. When you are first hit with this, it is such an emotional blow, then for me, it became physiological, for example figuring out wigs, maybe how to tie bandanas, the drug treatments.
On a personal front, I visited Carolyn's and found they had a nice selection. I can't go again until February, so I will get my first one then. From which web site, what should I know, or what brand was your less expensive wig?
I will keep you posted.
Cheers.
C
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Hi C
The wig web site is wish.com - I was just on there and looking at the choices. Prices are really cheap - ~$20 for a shoulder length mono-filament wig. I will say that the one my hairdresser ordered for me from there does not feel the same as the one I got from Carolyn's. The 'hair' is a different texture. But for what she paid for it - it is nice to have a selection to choose from in case something goes wrong with one that you have. I'm not sure what it costs to get a wig repaired at Carolyn's.
I would be interested in joining any support group - informally at a library or coffee shop is okay with me.
M
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