Replies to This Discussion

Permalink Reply by Mandy on July 24, 2008 at 3:43pm

Hi Tammy! Have you ever gone to a local support group? That's something that you could do together. Definitely sit with her and go through this site for her - I think it will be really helpful for her to see others on here...especially girls her own age. Also one thing you should do for sure is have her see the video on this group page: Click here. This group was started by a young girl that wants to make a difference and the video is her speaking to the other kids at her school about alopecia while being proudly bald.

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Permalink Reply by abby lawson on July 24, 2008 at 8:58pm

There is no local support groups that i know.I have given pamphlets about the cap program to her doctors and iam hoping someone local signs up so we can get in touch with them.I have talked to Abby about letting her friends know and she gets upset when i talk about doing that.Abby is not here with me now she is with her aunt,but as soon as she gets here i will show her the video also I just signed her up on the preteen chat room so maybe this will help also.Thank you so much for all your information i did not even know these sites were even available until her sister donated 14in of hair to locs of love.One more thing i am not so good on the computer and i cant write but so often i was in a car accident and it takes me a little while to filter all of this do to a head injury so sorry iam a little slow but please keep writing me and giving me any advise you can. THANKS

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Permalink Reply by Mandy on July 25, 2008 at 9:05am

I'm in no way trying to push the support groups, but I did look in to it for you. I found that there is a support group in Richmond as well as Capitol. According to mapquest you're about an hour and a half from either. While that is kind of a long drive, maybe it might be worth it to try it once? If meeting real life kids that have alopecia like she does is something that interests her it might be worth a shot. I went to our local support group meeting. It was about an hour drive for me. It was totally worth it, I thought. If you're interested, email Laura at NAAF for the meeting leader's contact info. Her email is laura@naaf.org.

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Permalink Reply by abby lawson on July 25, 2008 at 9:56am

YOU ARE GREAT!I never thought about going that far to look for a group.I know Abby would go because she has begging me to take her to the one in PA.My husband and I are taking her to cap camp there in sept.The founder of this group is also a awesome person. I feel like i am getting somewhere for the first time in 3yrs.Thanks

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Permalink Reply by Mandy on July 25, 2008 at 2:53pm

Oh yay! If you go, let me know how it goes, ok? :o)

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Permalink Reply by Char on July 24, 2008 at 10:59pm

My mom felt like you did, she just wanted to fix the problem. But the problem wasn't something she could fix. She tried everything to get it to stop. But as time would tell, the disease wouldn't stop. It took time for me and my family to accept what was to be the inevitable, bald. Growing up with Alopecia Areata was difficult at first, but once I made it clearly known that I had it and wasn't ashamed of it, people became accepting. Nothing the doctors did could have stopped this from happening. My doctor even told me to just accept it for what it is and try to move on. The one thing I did do was I did my science project on it. Then I presented it to the class and let them ask questions. I was in 7th grade then. I think that helped alot too. Growing up with Alopecia Areata made me accepting Alopecia Universalis a little bit easier. I remember when I had hair and thinking how could this get any worse, and it did. But now I have to live with what God gave me and eventually your little girl will come to accept it too. It just takes time.

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Permalink Reply by abby lawson on July 25, 2008 at 12:46pm

Thank you !What did your mom say to you?Did you rebel and hide what was the turning point for you?What helped you to except this?What was the one thing that said okay this is who iam .What can I say to my daughter to help her?All of the people one this web site have been so helpful I have so many question I wish I could reach out and hug you all .All of you are so brave and beautiful and willing to help. All I have is thank you I feel like I owe so much more.I have people here to talk to but it is not the same as talking with people who know what you are going thru. Thank you again Tammy

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Permalink Reply by Char on July 26, 2008 at 8:49am

"What did your mom say to you?" She told me everyday that I was beautiful. She cried with me and listened to me when I need someone to trust in.
"Did you rebel and hide what was the turning point for you?" I never rebeled and hid because of my alopecia. I hid my alopecia well when I was in school. During sports is when it really showed and my teammates never once teased me. They all understood because I imformed them prior to. The less shock the better.
"What helped you to except this?" Years of having Alopecia Areata. That and my awesome support from the family and friends. Don't get me wrong there are days when I want scream in fustration, but we all have those.
"What was the one thing that said okay this is who iam .What can I say to my daughter to help her?" I accepted it when I realized it's not coming back anytime soon and I was allergic to most of the topical solutions. Tell her we are all different and we can't control what God gave us. Tell her what my mom told me, "God only gives you what you can handle". Everyone is different is some way or form. Tell her it's okay to laugh at herself and to make jokes. As long as it's in an appropriate way. Like, I laugh when girls start fretting about their hair, I tell them I have the easiest solution for that. Then ask them if they want to borrow one of my wigs. I cope by joking about it, so that others know I'm okay with the way I am. People know that I do not get offended that easily and talk about it openly. I think the more people know what alopecia is, the better. Eventually, hopefully, she will too.

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Permalink Reply by abby lawson on July 28, 2008 at 1:37pm

Hi Char . Thanks for answering all my questions.Abby laugh about your friends borrowing you wigs.I hope one day soon Abby will start to laugh again and feel more comfortable about herself.
Thanks for your support,
Tammy Lawson

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Permalink Reply by Rose Marie' on July 25, 2008 at 12:29am

Hi Tammy

Your daughter sounds lovely. I am also a Mum of a daughter with AU. I understand how difficult this is. Just take it slow and keep searching and being proactive in finding solutions that will help you and your daughter.

Talking and discussion about alternatives, (like talking with her friends) are ongoing in our family. One of the hardest things to accept with this condition is that we can't control the hairloss but we can control how we react to it. We can't control people but we can educate our children on what good people behave like and the others are to be sorted as they come along.

My daugher got AU when she was 12 she is now 17 and doing well in her life. She is a prefect, an excellent pianist, is doing well academically and has a great social life. She also has no hair. Trust me this will get better. I know it probably feels terribly overwhelming at present. I think you are a pretty wonderful mum because you are looking for help for her and you to get this all into perspective.

Some of the things that helped me was joining a group like this. Meeting face to face many wonderful people dealing with alopecia. Educating myself non-stop about this condition and being proactive with my daughter in how she wanted to handle it. Not leaving this to her as that is too hard (I am the parent I needed to guide her and take responsibility until she was old enough to make all those serious decisions by herself). Explaining to her why I felt certain decisions would be helpful or negative in her life. You know your daughter better than anyone you will be able to help her through this and with you in her court she can't loose.

Hope that helps a little

Rosy

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Permalink Reply by abby lawson on July 25, 2008 at 10:47am

Hi Rosy,
Thank you for commenting.Does it really get better and when? Did your daughter ever talk about killing herself or say things like i am stupid ,ugly, fat, or why me? Did she ever question her faith.How did you deal with it ? Sometimes I want to tell everyone because I know in the end the people who are going to be okay with it will be and the ones who are going to be mean will be and they will soon get over it.I think it will release a great deal of stress for her if I just got it out of the way.What do you think ? How did you handle this ? Did you tell people(her friends) or did you just let her miss out on life and sit in her room and cry ? I don't know what to do will she hate me if I did this or will she be okay with it in the end.I feel myself losing control sometimes I want her to see she is so beautiful ,her eyes are water clear blue , and she has this sweet loving caring spirt about herself,she always puts other people first she is a wonderful daughter and I could never live with out her,but I can't seem to make her see this.Did you keep your daughter out of school or was this ever a problem? Abby has friends but she never stay at sleep overs unless its with her aunts or she is right next door so she can come home first thing in the morning so I can fix her hair.I will be going back to work soon I had a car accident in Jan and have been off work since and her dad has PKD so he is home all the time ,but she wants me to be the only one that does her hair.Her daddy use to braid it for her until it start falling out and now she won't let him touch it.I am so lost a could go on with a hundred questions ,but I will leave it at this for now.Thank you so much it really helps to just let it go sometimes.
Tammy

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Permalink Reply by Mandy on July 25, 2008 at 2:58pm

Tammy...again I don't have kids and didn't go through this as a kid...but honestly I wouldn't tell people (her friends) about her alopecia without her consent. I feel like that should be her decision and something that she should do for herself. That's just my initial thought on that. It just sounds to me like she really needs someone to talk to who knows what living with AA is like. I hope the support group can help with this. I personally would be more than willing to talk to her on the phone if you think this would help. If so, just message me and I'll give you my phone number. I just wanna reach through the computer and give you a big fat HUG!!!

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