Alopecia World
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Tears, Fears and uncertainty
Hello friends,
I come to you today just so upset and heartbroken. I have Alopecia Totals, but that isn't what is upsetting me. I have accepted my condition.
However, My 10 year old daughter has just started losing her hair about a month ago. I sat up with her last night as she cried unconsolably. It's falling out so fast for her - just like it did for me 17 years ago. My heart is breaking for her and I'm so angry and frustrated because there is nothing we can do. It's just so unfair. She said she doesn't even feel like herself anymore because her hair is disappearing.
As parents, how do you keep your child encouraged through a hairloss transition?
How do you handle the "I don't want to go to school like this" issue?
Thank you in advance for any advice you can provide.
Replies to This Discussion
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Permalink Reply by JessicaStinkle on
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I have no children and I'm also very lucky to have lost my hair as a strong minded young adult. I can't imagine what it's like to have to deal with this as a child. What I believe helped me with acceptance the most was how my mother raised me. To be a strong independent individual. I seriously have her voice in my head all of the time saying "but Jessie you aren't... [your brothers so you can't stay up that late, you are you]" I can imagine that if I lost my hair as a child she would have said "but Jessie, you aren't like the other kids and you can't grow hair". It never meant anything to me as a child but it made me who I am today; a strong independent adult. I am me, I don't care if I can't grow hair, or run the fastest, or drive the nicest car. If you have nobody to compare yourself to than you have nothing to envy. Is that not the largest problem with hairloss? If everyone was bald then you probably wouldn't want that $$$ wig or hair anymore. I think the only thing you can do for anybody is teach them self worth. You are who you are and it's a shame if you can be proud of that. I hope that my point is made clear, it was not the easiest message to convey from what is in my head.
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Permalink Reply by Sandy K. on
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Thank you for your response. It's such a different feeling seeing my child go through this as opposed to when I went through it myself.
I appreciate your in-put.
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Permalink Reply by Kara's mom 77 on
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Hi! My daughter is 10 and she lost all of her hair last Feb. She had hard time with it but she seems to be handling it much better than my husband and I. Also she doesn't know anyone else like her.Maybe if she did it would help them both. I would love to talk to you more if you would like.
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Hello Kara's Mom,
My heart goes out to you and to your daughter. Is there a Children's Alopecia project support group in your area? I am seeking one in my area. Those are great events to connect with others who are experiencing the same things.
definitely worth looking into. :)
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Permalink Reply by Sabina on
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Hi sandi, it is unfair isn't it. My son and I both have AT. He was six and I was 14 when our hair fell out. my son is now 14 and when I look at him I think he is at the age when my world changed. Going through hair loss and adjusting your life with no hair is so different for everyone. I am always aware that I am my sons role model, and he is not the only one is our household without hair. I remind him there are two of us. I have always told him that everyone has differences, but in our case it's just more visible.
As you know, your daughters journey won't be easy, but she will be assured that she is not alone.
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Thank you so much. You are wise - and I appreciate your input. This is a crazy journey, isn't it? But it's great to know we are not alone in it. Much love to you and your son.
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I am so very sorry - I know how hard it can be as a parent and the adults I know with Alopecia many really fear having their kids have the same thing. My daughter had patches when she was younger, but when she was in 4th grade (so 9-10y) she gradually lost all her hair. I remember feeling panicky about it. I kept her head covered with head scarves (they had a bunch at Whole Foods) for as long as I could and then we got her a good wig. There are lots of programs for getting free wigs for kids if that would be helpful - let me know if you want more info. She wore a wig through 8th grade. In the meantime I started a local Alopecia support group through NAAF so she could get to know other kids (and adults) with Alopecia and come to accept herself as she is. We also started going to the national meetings which were really inspiring and normalizing. She started high school this year and chose to go hair free - and so far she has been doing really well. For my daughter the other thing that was really helpful is having very accepting parents (and supportive friends) - we always told her she is beautiful with or without hair and never batted an eye when she walked around the house without hair.
I really encourage you to seek out a local support group (or consider starting one) both for your daughter and for you. People with Alopecia hide in plain sight - many of the folks in my group had never met another person with it prior to coming to a meeting and sharing with others with similar experiences is healing.
I wash you all the best - please let me know if I can be of help.
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Thank you so much for sharing your story, as well as your advice. Yours and your daughter's strength is inspiring! God bless you!
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My almost 12 year old son has AA - I know how heartbroken you must be feeling - it's far more painful watching your children go through something than it is for yourself. You just feel so useless.
Best of luck
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HI Teekay,
Yes it's disheartening to see our child go through this. Please know you and your son are not alone in this journey. Thank you for reaching out. ((hug))
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Permalink Reply by Michelle on
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I lost all my hair over a year ago and I struggle with the fact of it everyday, even though I've accepted it, it's still hard no matter. I have a 13 year old daughter and she feels bad for me and worries about me. I have the same fear this may happen to her. She had thick hair and I've noticed within the last year, it has gotten significantly thinner. She LOVES her hair. She understands my condition, she's been to dermatologist appointments with me and the the salon for wigs. I've explained to her that this may happen to her some day and if it does, no matter what, she is still beautiful and the same person inside and just because the outside changed a little, we will work together and make you feel like you again. I know it's easier said than done, but you've got to support her as much as you can. It is a dramatic change for ANYONE, young, old, male, female going through this. You got to show her that you are strong and she can be just as strong as you. I wish you both the best of luck!
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I'm not sure what the right thing is to tell a 10 year old girl. One thing I know for certain- things could be a lot worse than alopecia. I know this is difficult for you as a parent, but you are so lucky to have a healthy child. She could have lost her hair for an entirely different reason. One thing alopecia has taught me is how to be a great person, because I look at people entirely different now. I realize everybody has their own quirks, but they don't define who they are. Unfortunately, her classmates are still kids and a lot of them won't understand this notion. Your daughter is going to be a better person because of this. All I can say is to just instill confidence in that little girl. Tell her she's beautiful every day. I hope her dad is there to tell her every day too. I believe that God can make good of these seemingly awful situations. My mom was a special needs teacher and she had my little brother, who has a rare (one of six) genetic disorder. Only she could've handled that situation with such grace. You have the same condition as your daughter. I don't believe that is a mistake. You have what it takes to handle this situation, to love and support your daughter every day. Make the best of this situation and I'll be praying for you along the way. One day you will both be able to look back and understand how this disease changed your daughter for the better.
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