Comment by Jennifer on May 12, 2009 at 1:01pm

Hi Mary,
I so emphathize with your situation. My sister has a daughter with AT. She's dealt with it for several years using everything new on the market. Her biggest success was with 2 products found on this website that offers eyelashes and eyebrows that work incredibly well for her and will for you, too. I have AU and also use these 2 products successfully. I lost my hair last year. See if they can help you. www.blinkiesonline.com/
Good luck! Never give up!!!

Comment by Heather on May 12, 2009 at 8:24pm

Hi Mary!
Coming from the perspective of a teenager who was diagnosed when I think I was about ten, I'd say that you should encourage your daughter to tell her friends. I know with me, every one and a while my class would have a classroom meeting, or a 'Reunion de Classe" is what we called it because of French Immersion. I told my teacher about AT because I missed school quite often because I took Prednisone Steroid, and the side affects were really bad on me. I got a family friend who's a docter to come in to the class, and explain all about Alopecia. It was WAY easier once I'd told everone, and everyone was super supportive. Now, it's a little harder in High School, because my school is HUGE so it wouldn't really make sense to tell everone. My closer friends do know, though. I wear a wig all the time when I'm out and about, but never when I'm at home. It's more freeing to be bald, I find. I don't know about your daughter, but when my hair fell out, it was quite gradual which gave me time to accept it, but it might help your daughter if she were to talk to someone else her age with Alopecia. I never got the chance, but I think it would have made a difference. Also, this is just me, but I always like to milk the fact that I don't have hair. Encourage her to look at the bright side. For example, at camps and such, use the lack of hair as an excuse to be in her friends' cabin. Honestly, Alopecia sucks but there are some upsides. I used to get Cortizone injections before all of my hair fell out, and for every injection, my mom would buy me a Peanut Butter cup. little things like that really seemed to help!

I hope some of this might be useful!

Heather

Comment by Angela Varnum on May 12, 2009 at 10:49pm

Hi Mary,
I feel your pain as a mother and as a woman with AU. I have had AU since I was 11. I was a very depressed young lady. I felt alone and was very embarrassed. Kids are mean and school was a "horrible" place for me. My parents felt helpless and I shut them out because they couldn't help me.
Educate the kids in her school. Believe it or not the kids will rally around her and support her. There will always be a few mean kids in the bunch.
Remind her every day that you are her biggest fan. Look into permanent eyebrows. Those made a huge change in my adult life. I really could have used those 30 years ago. I hope this helps a little.

Angela

Comment by Sharon on May 13, 2009 at 2:21pm

Hi Mary. This is a really difficult time for you all. Our daughter was 8 when she began loosing her hair 4 years on she is now between AU/AT. I think for every family/person who is living with alopecia their journey and the way they handle it is different.

For Nicole her hair loss was gradual. Luckily she has been ok with how things have evolved..........that isn't to say we haven't had our moments because we had...........a big one was the decision to get her first wig and then to shave her remaining hair off.

Nicole hasn't chosen so far to go public with her hair loss she has told a few of her close friends.......telling people is an option we discussed with her but she didn't feel comfortable with it so we have respected that. Who knows as she gets older she may find that this is more of an option for her.

You know your child all I can suggest is that you keep talking to her..........search for products that will make her feel like she is just one of the gang..........we have bought silicone eyelashes, however with summer and swimming Nicole prefers to wear the tattoo types which you can get from blinkies.com or headcovers.com. We have also searched for waterproof eye makeup products which we also got from headcovers.com............as Nicole is just starting to experiment with makeup........I have found it really hard to find a makeup that totally stays put and am still looking..........Nicole has also recently got her first vacum wig which has made a huge difference as she doesn't have to worry about someone pulling her hair off.

I wish you well Mary I know this isn't an easy time but you know we are all here for you and if your daughter would like to message Nicole please tell her to feel free to do so this is a good place for her to visit too to help her realise that others that have alopecia are ok and living fullfiling lives. (I keep telling myself that when the rollercoaster is starting the fall).

Take care
Sharon

Comment by Brianna and Mary (mother) on May 14, 2009 at 8:08am

Hi Sharon. Thank you so much for replying. How did her friends react when they saw her without hair for the first time? Was Nicole embarrassed?(by the way my daughter's middle name is Nichole). I think my daughter is scared of how they will react to her. Some children can be cruel no matter what. She doesn't know anyone her age or anyone for that matter who is going through this. She finds it hard to talk with us about it and I can see that it really bothers her so we try not to push the subject. Thanks for listening because I find it hard to talk about it to my husband.

God bless you Sharon

Comment by Brianna and Mary (mother) on May 14, 2009 at 8:17am

To Heather. Thank you for sharing how you managed middle school. My daughter is still in elementary school. (4th grade). We can't get her to open up to family without her feeling embarassed.I want her to be able to talk someone who understands what she is going through. As a child it must be really hardto go through losing all your body hair. She also has trouble with just letting the doctor see her without the wig on.
Did you feel a whole lot more comfortable after telling the people who mattered to you most? I appreciate all your words of wisdom.
Thank you so much you truly are a blessing
Mary

Comment by Sharon on May 15, 2009 at 4:07pm

Hi Mary
Your welcome it is a huge thing that your family is going thru and it affects each of you even though it is your daughter who has alopecia..............Nicole will bear her cute lil bald head to her girl cousins, and I think one of her friends but she chooses who she feels comfortable showing her georgous lil head too and it is her right to do that, and it was a very long time before she told them as well..........there was one close friend who knew and she moved away, that was really hard on her..................just because she doesn't have any hair doesn't mean she has to show everyone...........one day perhaps she will be confident enough to do so but not at the moment. Nicole was the same as your daughter Mary she didn't like talking about her AA much either she just got on with living her life.............It worried me as everyone said keep talking to her which I did whether she wanted to listen or not and we have had to have those hard conversations about shaving hair and wigs etc but it kinda all just evolved and happened so it was ok.

I am sure it is a very real fair how others will react if they saw their heads Nicole will choose to show people when she is ready to cope with others comments. I think with young ones it is us mums who find it hard to cope with. I am here if you need anything else Mary just msg me.

Take care
Sharon

Comment by Heather on May 18, 2009 at 7:22pm

Hi Mary!
Just to answer your question, I did feel a lot better after I told people, and I strongly encourage your daughter to do so. It was so scary to tell people, but my life was so much easier once people knew. It will get better - when I first started losing hair, I didn't even want my sisters to know, but now I walk around the house with no hair at all. Also, I'm from Canada and I guess our schooling is different. I told my class in elementary school (grade 5) and it was one of the best things I could have done.

Comment by Brianna and Mary (mother) on June 18, 2009 at 10:48am

thank you alot

Comment