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Permalink Reply by Eliza alisa abgail on November 18, 2011 at 8:54pm

telling her is beautiful and will always be no matter what, My mum sat me down and told me nothing is going to change. Even if your hair is all gone. So don;t ever run away from your problems especially where alopecia is concerned.Enjoy your life and do the things that you want.And give her free reign over what she would like to do with her hair. Does she want to shave it or keep it a while longer. And show her options like scarves and let her pick which ones she wants. And hugs to you. I can't imagine how you are feeling about all of this. It was harder on my mum.. then it was on me.

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Permalink Reply by Deeann on November 18, 2011 at 10:50pm

I have had alopecia since I was 7, with regrowth at age 14 for 7 years, and am now universalis at age 40. My advice to you is let her guide you. If she wants to wear a wig one day, let her. If she wants to wear nothing, let her. Her comfort is the most important thing to focus on. At her age right now, things are a lot different than they will be for her in another few years. I have a friend who has had it since she was 15 months old, and wouldn't change it for the world. It's tough on parents, but love, and understanding ways to cope with emotions that are overwhelming are super important. Good luck. Feel free to contact me direct if you'd like.

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Permalink Reply by Rodeli on November 20, 2011 at 12:12am

Hi Kristin, I lost all my hair when I was 3 years old. I actually do not remember having hair--I only know it from pictures. AND one neat thing my mom did was save some of my hair in a ribbon which she kept in a lock box and gave to me when I was older. She thought I would like to have a sample of the hair I use to have for sentimental reasons when I was older. I appreciated her gesture. My parents were well meaning and did a lot taking me to multiple doctors, hospitals, and wig places; but to be honest, it became more of a burden on me than a blessing. Many of the treatments made me sick and did not bring my hair back anyway. The wigs were horrible in those days and I looked like a little kid in a old ladies wig--even when my parents had them custom made, the wig shop always gave me these terrible older lady styles. My parents thought I would be teased less wearing a wig, but in actuality I think it was worse. When I was still a pre-schooler and they tried to get me to wear them, my mom says I often would take them off and refuse to wear them. I preferred hats or scarves or to go au naturale when I was little until I succumbed to the pressures of wearing a wig full time when I got to school age. I know my parents wanted what was best for everybody including me, but in hindsight, I think just letting me be myself and not pushing the wigs would have been better. Today things are better and I know parents who are raising little bald girls and totally supporting them to be themselves and not forcing the wigs and these girls are growing up with much better self esteem, full lives, and lots of friends and supporters. It also removes the "fear and terror" of people finding out you are wearing and wig and why or it falling off. That was SO stressful for me as a kid. I think it is also important to work with your daughter's school and other programs she may be involved with to give her added support and also solicit education to raise awareness so other kids will understand what has happened to your daughter's hair. The other and probably most key thing for you and your husband and family members can do for your daughter is to let her know you love and accept her AND her alopecia! I knew my parents struggled with accepting it and that made me feel I was never good enough without hair. It affected out relationship throughout my life. I was their first born and I think it brought disappointment that I was not "perfect" (you know the whole 10 fingers, 10 toes thing) and I think they feared my siblings to follow might also get it--they didn't. I also know it was very painful for them to deal with the teasing, etc. I endured. I remember my grandparents once telling me that if I ever needed to talk about being teased or if my wig fell off at school or anything to talk to them first or instead. The docs had suggested my parents take me to a shrink when I was a pre-schooler to see if my alopecia was related to some "mental health" problem. But after talking with me and my parents, my mom admitted later that the shrink said I was a happy, healthy (physically, mentally, and emotionally) little girl in spite of the alopecia, but it was my parents who were having more problems coping. LOL! I still love that part! So that is some of MY best advice as one who grew up from a toddler with Alopecia Totalis and now Alopecia Universalis in my older years. Let your daughter be your guide. IF she gets to the point where she wants to see specialists and try treatments, then support her then, but don't force her before she knows or even understands what is happening to her. If she gets to the stage she wants to wear wigs, help her find the most natural wigs for kids (hard to do in my estimation--kids at school have wig-dar--I don't care what anyone says). Email me for tips of things I did when the times comes. And if she decides to grow up living out loud au naturale, accept and support her with that too. Oh, another "little thing" I would recommend is (especially if you have other kids with hair and you comb, brush, or wash THEIR hair) is to be sure you do things like kiss her head, rub her head, wash her head--this will help her feel you are as connected to her hairless head as you are to her siblings haired head. I know it sounds weird, but I remember, except for those occasional times when they would be doing some salve treatment on my head where they had to rub some stuff on my scalp, they didn't really touch my head or kiss it like they did with my siblings that had hair. I use to envy when I would see them play with or do things with my siblings hair and I didn't have hair or that bonding experience with them like my siblings. I remember one time my mom asking my dad to rub the salve in my head because she really didn't like doing it. Maybe she didn't like the greasiness or smell, but in my child-like brain, it made me feel like she didn't like touching me. Again, my parents probably did the best they could with what they could handle, but however parents treat their little ones with alopecia, trust me, it does impact them in subtle ways both short term and long term. Try to make things as much the same as you can between your kids. Keep us posted on your little beauty. And as she gets older, if she wants to talk or email those of us who have been in her shoes, we are here to help you support her!

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Permalink Reply by jinna on November 21, 2011 at 9:36am

My 8 yr old daughter was diagnosed with alopecia totalis 1 yr ago. It is amazing how resilient children are. My daughter was always shy and quiet so I worried more about how she would handle her alopecia. Well let me tell you she has handled it very well and I realized that if I let her lead the way and help her do what was comfortable for her and be there as a support she would find her way. My daughter only wears a scarf to school and her wig everywhere else that is what she chose. I think if you let your child make all the decisions about her alopecia even down to how much treatment she wants to try it will help them feel like they are in control of this and it will help in the future. good luck to you Im sure your daughter will grow up to be a very happy little girl.

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Permalink Reply by Heather on November 22, 2011 at 12:07am

I definitely think my mom was the biggest influence on how I learned to deal with Alopecia. I was diagnosed at 11, so a little bit different than your daughter, but I'm sure no matter how old you are similar things work. So for starters, she always made sure I felt like having Alopecia was no big deal. From day to day she just made it "normal" and a part of me, which helped me accept it. At the same time, she also acknowledged that living with the disease is a challenge. She attributed me with how I handled it, and always made sure I knew how proud she was of me for handling it the way I did. Every once and a while, if I was having a bad day, she would sit me down and tell me to give myself a break. She'd say, "You're dealing with a lot" and let me know that I'm allowed to be upset or confused or whatever other emotion I was feeling from it.
My mom also did little, seemingly unimportant, things that made the biggest difference ever. For example, when I used to get injections in my head to have the hair grow back she would buy me a peanut butter cup (my favourite chocolate bar) for every needle I got. Also, whenever we went to Children's Hospital to visit the dermatologist, she turned the excursion into a positive experience. She would take me to get a starbucks, and then we'd visit the little thrift shop that was in the hospital. That way, I would focus on the good things rather than the idea of getting injections. As I got my injections, she would hold my hand and sing to me, which always made such a difference. Little things like that taught me to look at the bright side, and that has ultimately been how I've dealt with the disease.

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Permalink Reply by jinna on November 22, 2011 at 10:04am

Thanks for your inspirational story. I hope I can be half the Mom your mother was to you. Your hair looks fantastic I thought you regrew all your hair when I first saw your photo.

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Permalink Reply by Deana DG on December 5, 2011 at 4:25pm

I have had alopecia since I was 9. The doctor told my mother do not treat her differently or baby her. I think I am a better person for it. I had my days when I would come home crying from school and I am sure as a mother myself now that it killed my mother but she didn't take pity on me, thank goodness! I learned to deal with other kids and adults in my own way. I grew to not worry what others think. Although I wore a wig and still do, now as an adult I go out more without it because I grew to accept myself. I never let being bald hold me back. I still enjoy roller coasters and I also took swimming lessons as a kid. When you grow up with alopecia you find it's the ones close to you that can't figure out how you can deal with it so well, but when it's the only way of life you know, you never think about yourself or life differently. Y sister who is less then a year older then me does not have alopecia and let me tell you my life turned out no different from hers just because I am bald. I wish your daughter and family the best of luck. Please ask any questions. I am now 30 so more then half my life has been lived with alopecia, it's nice that with social media there is so much more out here now for us. I had to do it alone, your daughter won't thanks to technology!

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Permalink Reply by Georgia Gardner on December 9, 2011 at 3:44pm

Hey Kristin,
I've had alopecia since I was about four and for the longest time we had no idea what it was. We saw several doctors and couldn't find adequate information on the disease. I think the best way to deal with anything is to know as much as possible about it, and my mum, who is a doctor, was very good at helping me understand what was going on. It can be a scary thing when you aren't sure why things are happening. Beyond that the best thing, personally, that my mother ever did for me was not give me the recommended treatments. While I have absolutely no objection to adults who decide to have cortisone injections or creams, the fact that doctors recommended these treatments, which came with a number of warnings and dangers, to a child amazes me.
I think the fact that you're online here asking how to make her life great means it probably will be.

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