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Permalink Reply by Metoaka Perez on October 5, 2009 at 11:19pm

Hello my name is Metoaka and I am a 33 yo who also has AA and a 13 yr old son who has AA. You are not alone. I was diagnosed 2 yrs ago. My oldest son saw a chance for him to help and he started growing his hair for Locks of Love. He thought that it would not only help those who have cancer but also to help those of us who have issues with or own hair. Shorltly after donating his hair for the first time, I went to restyle his hair and found his first bald spot. From the research that I have done, it said that if it starts later in life you are less likly to have others in your family who have alopecia. I was the first, but my oldest son has also ended up with it. We have both dealt fine with knowing and not knowing when the next time we will lose our hair. We both are not scared and discuss openly that if the time comes that it would be better to shave off what hair we have left then we can play around with wigs and styles. Feel free to contact me anytime.

Metoaka

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Permalink Reply by Nick Barlulis on October 6, 2009 at 8:19pm

I had AU in kindergarden and first grade. I agree children can be cruel...I to saw that first hand. I would be willing to stay bald from 46 on if one child could be spared this horrible disease at such a young age. The only promise we have however is you , me and others like us prevailed and your son will too. He will learn very young in life that character is far more important than appearance, though our society has yet to learn that. You are in my prayers. Nick

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Permalink Reply by Brandi DeArment on October 7, 2009 at 9:43pm

Thank you Nick for your kindness. Preparing him and myself for him to start school will be hard but I do know we will get through it some how. I agree with you on have any form of alopecia later in life is not as big of deal as a child having it in school. God bless you!

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Permalink Reply by Sabina on October 10, 2009 at 9:34pm

Hi Brandi,

I am also that one in a million! I have had Alopecia Totalis since I was 15 years old and was told at that time it is not heriditary ( I'm now 40). My son developed AT last November, and it took 3 months for all his hair to fall out. He is now 6. Only a mother with Alopecia know's how it feels when after their child takes a bath and there is too much hair in the water. My husband and I were devastated when knew he had Alopecia, but on the other hand, relieved it was not something more serious.
With regards to school, his friends have been very accepting. I have tried to be open and nonchalant about it. No more haircuts or tangles in the morning. My son Marcus has taken this in stride.
I remind myself that when I was young, I was the only one with no hair, for Marcus he see's me and its normal for him. I hoping that this will make the difference for him.

I joined this website last year, and couldn't find anyone else in the same situation. Maybe we will be able to help each other.
Sabina

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Permalink Reply by Brandi DeArment on October 11, 2009 at 10:12pm

Sabrina,
Thank you for your story, it made me feel not so alone. My son is only 4 years old and has patches of hair. He is started to loose more hair I have noticed on the top. He looks a little crazy but he will not let me cut his hair off. He does not seem to notice that he is different, afterall he figures he has some hair. I have been completely bald since I was a year old and have never had any hair. Well unless you count arm pit hair..lol Of course I would get what no woman really wants. I am glad to hear that your little boy is doing okay, I know how terrible the kids can be and that is what is scary to me. I think I was emotionally damaged for most my life because of the teasing and did not realize it until recently. I am more accepting of myself now and know I am a good person. I would love to keep in contact and maybe share thoughts and prayers with eachother. I am glad that we do understand what are kids feel more then a normal mother.
Thanks,
Brandi

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Permalink Reply by terri on October 12, 2009 at 10:24am

Hi Brandi,
I am a mom of a first grader girl who has alopecia universalis. I was really scared for her going to school because I remembered what school was like when I went. And anyone different stood out and didn't have as easy a time. However, things have changed. Children now are exposed to so much diversity and personal differences that not having hair isn't that big a deal. We sent a letter out in advance to all the parents and my daughter has been in school since pre-K and has not had any negative comments from her classmates. Only in the past month has she been wearing a wig to school on a regular basis because she has a crush on a boy. All the children know that she is bald and the girls in class like her wigs. They ask her if they can try them on. And when she is bald, they occasionally ask if they can feel her head. It is smooth like butter.
My daughter even did a presentation in front of her school last year on Children with Hairloss. She does go to a private school.
I think your son should be fine as long as you help educate everyone in advance to be proactive. The last thing I wanted for my daughter was to walk into school to be bombarded with the stares, mouths gaping open and the blunt questions fired off at her. And by letting everyone know in advance, all the questions were already addressed.
Does he start school next year?

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Permalink Reply by Brandi DeArment on October 12, 2009 at 2:43pm

Hi Terri,
My Son Trew starts kindergarden next year. I am not sure if I should talk to his class or do something for the whole school. I am not sure if I should wait until he is in 1st grade or start it in kindergarden. It seems that he does not really notice to much that he is different yet. He has a little hair but it is just some patches. Your daughter is a doll and I am glad that she is doing well in school. Makes me feel better about what Trew might encounter. He also has a brother who is in the 2nd grade, not sure how it will affect him either. Trew is not in daycare and in no preschool so I am clueless on how the reactions are gonna be for him. Thanks for all your input and help!

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Permalink Reply by Royce D Eggleston on January 29, 2010 at 1:47am

Hello AW, its been a while since I've said hi, Well I'm a new dad, hippeee! my wife and i are proud parents of twins, a boy and a girl born January 4, 2010. Sage Elaine & Solomon Royce born 1 minute apart weighting 6lbs. and 5.12lbs. its been 16 years since I stayed up all night changing diapers by it all came back to me quick. Yes when i look at my newborns I cant help to think, God will not allow these beautiful babies to go through what I went through growning up with AU since the age of 10. I have 3kids by my first marriage 2 biological, and I had a scare 6months ago with my 16 year old when she discovered a bald spot on the left quadron of her head. I nearly had a breakdown but since then it grown back in. So far so well. I remember as a young adult because of this fear, swearing to never have kids, and look at me now,5kids. Well i will give the AW an update soon. farewell peeps...

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Permalink Reply by Donna Wingate on January 29, 2010 at 5:33pm

Hi

I am 33 mother to Erin 3, I have had aa and au on and off since age 3 and I hope and pray all the time my little girl never goes through the torture i did as a child, i do think her hair is really thin and fine, still baby hair, i have taken her to our gp who states her hair is fine but nothing to worry about but god knows i do, i just hope it thikens up and im worrying for no reason,

Donna

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