Alopecia World
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Support in Alberta, Canada
Replies to This Discussion
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Permalink Reply by Amy on
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Hi Beckie,
I'm from Calgary and haven't had much luck finding any sort of support group either. I did put up an add on Kijiji and had a few people respond, but nothing ever came of it. I also called a local wig shop who deal mostly with chemo patients and said they had quite a few alopecia clients. I asked the lady I was speaking with to pass my info on to any clients who'd be interested in getting together to chat. Again, nothing.
I hope you have some luck getting something going in your area! If your son ever wants to e-mail, I'd love to chat with him! I'm an elementary school teacher and can relate with kids pretty well. I'm here is you or he wants to chat!
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Permalink Reply by Beckie on
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Hi Amy! It's great to hear from you and I appreciate your offer to chat with my son. I may take you up on that. There is a support group in Edmonton that meets once a month but it's always a Sunday evening and we just can't get there. My son is pretty good about the whole thing but he's completely bald and sometimes gets a bit down about it. I'll be in touch. Beckie
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I totally understand how he feels. Most of the time it doesn't bother me, but I do have times where I get really down about the whole thing.
Is your son in grade one yet? I'd be interested to know how he deals with the kids at school. I know my students will often comment on my hair, but have never actually come out and asked of I am bald or not. They will ask why it always stays the same or why it never grows (especially when I was wearing my short hair). It's funny the things they notice.
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Hi Amy. My son's in kindergarten and as far as I know the other kids haven't said anything. My son goes to a group where hats are part of the uniform and we were getting ready to leave one night so my son takes off the hat to put on his touque and this little boy, completely shocked says "he's bald!" The dad got the kid out of there before I could say anything and my son just shrugged his shoulders. It's the adults we struggle more with. They ask him if he likes his head shaved or they'll ask us about it with him standing right there. UGH! But we try to take it all in stride hoping so will he.
I saw these dolls on CAP kids (they're on facebook) where you can take their hair off and use them to explain alopecia. They also come with literature on how to explain it. It might be something that would help you explain things to your class.
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I agree! Adults have way more issues and less tact when dealing with someone who has alopecia. Thanks for the info about the dolls. I haven't thought about telling my class, only because I have SUPER nosey parents. And I just don't have the energy right now to deal with them.
I didn't start losing my hair until I started teaching. I think it's stress related. When I went on my honeymoon and took a week off of work, my hair grew back. Every summer my hair has started to grow back and by October, it start to fall out again. I'm actually thinking about going on medical leave because I'm so stressed out. It would be interesting to see what my hair will do if I do go one leave.
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I live near calgary and am interested in looking at wigs/hair pieces and dont know where to start, do you mind telling me what wig shop you are referring to and where it is located in calgary. Thanks
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Hey Ashley,
There are a few wig shops around town. My personal favorite is Deva Dave's. He's on Edmonton Trail and 8th Ave NE. His store is so much fun! It caters to drag queens, so he carries some pretty crazy wigs, but has some really nice ones too. He has a salon upstairs and will also cut the wig for you.
There is a huge new wig store in Cross Iron Mills called Oceana and the Bay in Market Mall has a small wig shop (but they carry styles suited for older women).
My parents live in Lethbridge and my mom was telling me that there is a wig shop opening up there too. Sounds like they will be doing custom wigs.
I got a 'gripper' a few months ago and it is so much better than any of the other ones I bought. If you're thinking of getting one, I can pass on the name of the rep out in Vancouver and if you ever want to see one for yourself, I'd be happy to show you mine.
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Hi Ashley if you're are looking to buy 100% virgin remy human hair wig you can check this seller out at www.berrylacewigs.com, i bought a couple wigs from them and I’m very pleased with them... they are also located in Ontario, Canada...i wish i could join your local group, but i live in the city of Mississauga,...wish you all the best
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Permalink Reply by Sandra Fournier on
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Hi there!
I've been reading the following Alberta support link. I' m from Calgary and have Alopecia Universalis. At one time, about five years ago we had a formal support group chapter in Calgary. It has since dissolved, but I was an active member for years and have contacts that I continue to keep in touch with.....including a Mom of a 12 year old girl who has Alopecia and other women ranging in age from 30-50. Feel free to email me if I can answer any questions or help with anything. I was thinking it would be nice to gather a few of the gals for an informal get-together this fall, perhaps you'd like to attend? Take Care - Sandra email: thefourniers@shaw.ca
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I love the idea of getting together, unfortunately, Calgary is about a 3 1/2 hr drive for us. I may be in Sylvan lake for a few days this summer and maybe could co-ordinate the trips. That way I have less driving.
I've had a couple of interesting classroom issues recently. Not all bad. I was fieldtrip mom for a day with another little boy's grandpa. We got to talking and he admitted to me that his family is very worried about our son and not knowing what is wrong with him, they've been praying for his health. How wonderful is that? I sure it's happened with other people too but that haven't said anything. While it's humbling and wonderful, I feel like a fraud. I feel like I'm letting people believe my son is sick. Any suggstions on how you have handled this?
The other issue, if we have a bit of a mean kid at school and he's chosen my son as his target. We're working on that in general but one day he was hitting my son in the head with pinecones and left scrapes. Another, he wrote on his head with a ball point pen and had pressed quite hard. I get the feeling he's facisnated with our son's head. What can I do with this?
I appreciate all of the support and meeting all of you.
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Hey Beckie,
Everyone deals with things in their own way, but personally this is what I would do.
In regards to the grandpa, I would have thanked him for his kind thoughts and explained that your son is not sick. I'd explain Alopecia and that it isn't anything life threatening, but that it isn't something easy to deal with. The grandpa might have questions, and I would be honest and answer them.
As for the little guy who's giving your son trouble, from a teacher's perspective, I'd want to have a chat with him, his parents and you and your son together. I'm sure the kid isn't doing it to be mean. He probably notices that your son is a little different and doesn't really understand it, so this is his way of dealing/coping with his feelings. It might also be his way off trying to communicate with your son about him not having any hair.
I'm not sure if your son's teacher has been told about him having Alopecia or not, but I think she should facilitate a meeting, with you there, to help the other boy understand why your son has no hair and that what he has been doing to him is hurtful and not acceptable. Be totally honest with him. It's amazing how much kids at that age can understand. By having the other kids parents there, you'll be able to educate them on the situation and they will be better prepared to follow up with things at home if their son has any questions or if there are any further incidents.
I have a little girl in my class this year who has a club foot and a hand that never fully developed. I asked her mom how she deals with it and if the other kids ever give her any trouble about. The mom said that from day 1 in kindergarten (she's now in grade 3), her daughter has always been very open and honest about it with her peers. She answers their questions, lets them look at her hand and doesn't hide it at all. The mom says that her daughter still has times when she gets a little down about it, but it's rarely because of things other kids have said or done to her. I've never had any issues this year with the kids being mean to her about it. Everyone knows and understands and it's not a big deal.
Maybe by talking to the kid and helping him understand, he'll be able to help the other kids understand and be a bit of an advocate for your son later on if other kids ever have questions or start to bother your son.
And just think, only a few more weeks of school! I know I'm counting down the days!
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Permalink Reply by grandma concerns on
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I am a desperate grandma trying to find some help from others who would be willing to help me with my granddaughter who is 12 now but has had alopecia universalise since she was 7. Her parents went through a bad split and she was sent with her father (who had a gf that she disliked very much) because her father convinced her mother that she couldn't provide the things that the girls would need. It was about 4 mo after this that my gdaughter lost her hair. Last year she told her father there was no way that she was going to live with him or that woman anymore and her and her sis (8) went back to live with their mother (who now has a boyfriend) and was ecstatic as she had been fighting for all of those years to get her girls. BUT now what is happening is the mother has no time for the girls as she works full time and spends the rest trying to devote to the relationship of her and her boyfriend.
She has no money for good wigs, so we are buying $15 ones that don't fit her properly, she is getting very bitter and will NOT discuss Alopecia or anything to do with pen pals or getting other friends. I found out about the gripper wigs and tried to find a way to get one for her but when I found out the cost I knew that I would have to go through a Lion's group etc. That's ok but I don't know anyone who sells them in Canada. Do YOU? Do you know where there are wigs under $50 or even $75 (real hair) (long) around the Calgary area.. I would love to talk to someone, anyone who is going through this problem too. She is an awesome girl, who won't let others see it. Underneath she is crying her heart out and her outer self is a shell of bitterness. She is a beautiful girl, with weight issues, and also needs to have counselling but parents won't hear me or her cry. I wish and pray that someone would knock some sense into their brains.
If you would like to talk to a grandmother and give me some advise please I'm open
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