Brianna and Mary (mother)

Female

Waterbury, CT

United States

Profile Information:

Relationship Status:
Married
About Me:
I am a mother of a 9 year old girl who suffers from alopecia totalis. She is such a beautiful girl but she is not ready to take a picture without wearing her wig. She has been missing all of her on her head, eyebrows and eyelashes for about 5 months now. If there are any resources or information that can help us to deal with this would be greatly appreciated. I believe God will restore all of her hair but until then I need help to help her deal with this condition.
Do you have alopecia?
Parent or guardian of child with alopecia
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall:

  • Roger

    Welcome.

    Roger.

    May 13, 2009

  • Sharon

    Hi mary welcome to Alopecia world.......take heart from all the wonderful people you will meet here and the wonderful advice and support you will get will help you get through the tough times.

    Look forward to getting to know you.
    Sharon

    May 13, 2009

  • Cindy

    Hi Mary, my name is Cindy and my 7 yr old daughter has alopeica for 2 yrs now. Like your daughter she has no lashes or brows as well. We live in MA and she is doing a treatment that is working for her. Sam has always accepted her hair loss and does not see herself as being any different from the girl next door. She does everything that a typical 7 yr old does and does not let her lack of hair prevent her from stepping it out. It is so import that our daughter find a few close friends that she can share this with and feel like her self around. You will be amazed how many kids will be so sympathetic to her and want to be there to support her. We don't tell alot of people,but all of Sam's close friends know about it and have seen her bare. I did want to let you know about the Children's Alopeica Project if you have not found them yet. www.childrensalopeicaproject.com. I do a support group here in MA, but I do know there is one in NY that may not be too far for you. In Aug CAP is holding Alopeicapalooza. It is a weekend conference geared for the kids. It sounds like your daughter may benefit from going. You can also contact CAP to get on their database and they maybe a family in your area to connect with.

    Samantha wears on her head headbands with hair sewn into them and she loves them. It maybe something of interest to your daughter. She loved them in the summer. www.hatswithhair.com. Also the hair club for men has a kids club. They gave 3 free hair replacements a year and 8 services. My daughter wears their wig as well as several girls on this site. You can find the contact info on their website. www.hairclub.com. I hope some of this info helps. I hope your daughter will begin to feel better soon..Cindy

    May 14, 2009

  • LeslieAnn Butler

    Hello and welcome, Mary!
    I know how hard alopecia can be; I think sometimes it can be harder on the parents of alopecians than on the children themselves. I have had it for about 30 years. After I became the spokesperson for the National Alopecia Areata Foundation, a lot of women and girls were needing my help and support, so I wrote a book called, "If Your Hair Falls Out, Keep Dancing!" You can find out more on my page -- and it's available on this site under "Bookshelf." Your daughter might benefit from reading it...let me know if there's anything else I can do!
    LeslieAnn

    May 16, 2009

  • Tracy and Amanda

    Hi Mary,
    How are you?
    Tracy

    Sep 26, 2009

  • Rachel Taylor

    Your very welcome! And I think it would be a good idea to tell a few of your friends it's amazing how much better it makes you feel to get it off of your chest. I also feel ugly sometimes but my mom always reminds me that I'm beautiful even though I don't always believe it, I try to take her word for it.
    I'll talk to you soon. :)
    Love, Rachel

    Mar 5, 2010