Comment

Comment by Jennifer Thalhamer on January 8, 2010 at 12:36pm

Wow Estee Your letter made me cry.. Good Tears! She is a strong lil girl who will go far! You are a great MOM, I bet that meant a lot to her for you do that and have her shave it!!

Comment by Estee M Vedder on January 5, 2010 at 7:11pm

Hello Everyone,
I just joined Alopecia World. My daughter, Elaine, is 10 and we just found out in July of 2009 she had AA. She just had one small circle about the size of a quarter and it slowly spread in one direction then stopped for about 2 weeks. After that she had two new spots that were not as well pronounced on both sides of her head. She was very afraid to tell or show anyone her hair even though people were commenting on how thin it was. When school was getting ready to start I took her in with me and we met with her school counselor and teacher to discuss the issue so they were aware and she would feel safe with them. This was extremely helpful for her. At the time though, she still wanted to pretend she did not have it and not to tell anyone.

By October 2009 she was to the point that she would cry because her hair in a ponytail would no longer cover the rest of her head. I told her if she wasn't comfortable we needed to look at getting her a wig. Well, the first day she wore it to school, it really drew attention of the kids. She had many ask her if she was wearing a wig and one boy pulled on it. She was extremely upset. She came home that night devastated. We had a lengthy conversation (her counselor and teacher called as well to discuss and see what they could do to help) that ended with a plan to write a letter that her counselor would read to her class about her condition. After that things looked up, until she realized wearing a wig and playing soccer were not going to work as well as she had hoped.

We opted for a bandana and she did wrote a similar letter that her coach read for her to her team explaining again what she was going through.

I think she is a brave little girl, I don't think I could experience what she has and keep my head up as high as she does. She shaved my head in October as well so we could (hopefully) grow our hair out together and she doesn't have to feel like she is completely alone.

My dream would be for her to be comfortable enough to go without her wig (I know she loves being without it at home), but I think we are a long way from that right now. She is currently "fuzzy" on the top of her head, but is now losing her eyelashes. When we go places she always has her wig on and also will pull her hood up over her wig because she thinks people can still tell. Anyone that she knows that she hasn't told about her AT she hides from. Any advice to help me get her more comfortable would be great. I look forward to visiting and learning from this site often.

Comment by elaine on November 30, 2009 at 5:39am

Good on you Sabina. I venture to the front without my "head" on but won't go out without it if you know what I mean. I'm not quite that brave yet but I would love to. I never wear it in the house though, half the time I literally lose my "head" lol.

Comment by Sabina on November 29, 2009 at 7:40pm

Good for you Elaine! I think at some point its good just to enjoy life, and not worry what's not on our head. I've just turned 40, and I never go out without a wig, but now I'm starting to consider it. The next time I go swimming I will wear a bandana, should be more fun. Still working up to it though.

Comment by elaine on November 29, 2009 at 4:47am

Since hitting my 40's I seem to have become more 'I don't care'. Went swimming and wore swimming cap it annoyed me so in the middle of the pool I took it off. It felt great but the cold hit my head like a slap in the face lol. Now I wear my bandana in the pool and I feel better. I don't ever see my hair coming back and sometimes I feel like that part of me is missing and that there are two of me, the one with the hair and the one who still has reservations about telling people. It's a weird feeling. I find it hard when it rains as without eyelashes the rain goes into my eyes it stings like mad and I can't see. Anyway going to go now as off swimming. I also have muscle damage so the swimming kinda helps. Take care all. xx

Comment by Sabina on September 18, 2009 at 10:18pm

Hi Kristen, I totally understand what you are experiencing. My son also has alopecia and I think he has adjusted better than his parents. He is 6, but we were very concerned about how school kids would react and treat him. So far, I think its going ok, as the children are very young and I think more accepting.
As I understand as a parent, I also somewhat understand what your daughter may be experiencing, I lost all my hair at 15. I luckily wasn't teased, but I didn't participate in a lot of things. I talked with the kids that would ask and try to be open, but I definately didn't want to be the centre of attention. Having alopecia made me more self confident and not subject to peer pressure. I think having no hair made me a better person with a wonderful husband where it it's not an issue ( especially as his son is the same).
It's very different for the child with no hair, and for the parent who wants the best for their child. I don't know if I can be helpful but let me know, as I know both ends.
Sabina

Comment by Emily Horsley on September 18, 2009 at 1:23pm

OMG Kristen, your story has brought me to tears, i can't believe how cruel kids can be! Why is your daughter so much more confident at her grandparents? Can you replicate those things at home? If all the kids at school already know she wears a wig, get her to ditch it. It would take alot of courage but you could get her to talk about alopecia in a show and tell at school, if the other kids understand more about the condition they may not tease her. I wasn't bullied at school for my alopecia but I think thats because everyone knew all about it and I talked about it openly. I truly hope it gets better for your daughter, everyone needs friends but it sounds like the two of you are the best of!

Comment by kim yazujian on September 17, 2009 at 10:53pm

Hi Kristen how are you. My name is Kim and I have had this since I was 9. Kids were rotten to me and made fun of me. Take your daughter to a alopecia specialist and have them give her diprolene liquid for her eyebrows, you put this on her eyebrows twice a day and they should come back. I wear false eyelashes both bottom and top, takes a little practice but she could try the latisse for that . You should invest in the wigs that suction to her head so they cant pull it off. my advice to nicole is to be straight with them and tell them to back off. My teachers never helped. Its a shame she cant go to school and just relax, I would get her into clubs outside of school so she can make friends believe it or not by high school they did grow up a little and leave me alone but its tough on a kid to have this we are no different but everyone makes us feel that way people are ignorant if you dont look like them if you have any questions feel free to write back Kim

Comment by Kristen M on September 17, 2009 at 5:34pm

Hello, we are new to this site. By we, I mean myself and my daughter. We are here to introduce ourselves and say hello everyone. I am Kristen and my daughter is Nicole. Nicole is 12 and has alopecia. We are here to learn from everyone, begin our road to dealing with her condition, and gain support from others who understand the trials of living with alopecia.
I am not really sure which catagory she fits into as far as AT or AU. She has no eyebrows, a handful of eyelashes, a few sparce patches on her head, and no hair on her arms or legs. Although she does grow a few thin pale hairs here and there, they never last long.
Every year Nicole goes to her grandmothers house for the summer. When she is there, she has total freedom from her wig. She loves this. At home, she wears her wig to school and every place else we go in public. She tried to go without it once to go school shopping, and found herself hiding in clothes racks when she noticed kids from her school in the store. Since then, she never leaves home without it on.
We now have kids looking in our windows at night, trying to sneak a peek at her without of her hair on, and kids trying to mess with her wig at school. I have gone to the childrens homes and spoken with their parents, and I have spoken to the principal at the school. This did help some with the window watching, but it created additional teasing at school. She deals with that well enough for a child her age.
As far as friends go, she has none.
I am proud of my daughter. She is a stong kid, and has no difficulties standing up for herself. I think I am the one who feels sorry for her, rather than her feeling sorry for herself. To explain that better, she does not feel sorry she does not have hair. I think she understands and accepts she is a little different from others, but what does hurt her, even though she never outwordly says anything, is when she is not invited to birthday / slumber parties, and when she sees the other kids playing and riding their bikes in the neighborhood. She says she is fine not having friends, but I know better.
So as a mom, what am I supposed to do for her? How can I make things better for her? So here I am, asking others with similar problems, to help me help her. Nothing like diving right into things I guess. Any feedback would be appreciated. And thanks for listening.

Comment by Mary on September 2, 2009 at 1:10pm

I'm with you, Emily!

• ‹ Previous
• 1
• 2
• 3
• 4
• 5
• 6
• 7
• Next ›
• Page