Alopecia World
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8-year-old daughter diagnosed with alopecia in June 2009
Hello Everyone. I've been hanging around this past month or so and finally decided to tell "my story". I am a wife to a very great man and also have two daughters...ages 8 and 4. My oldest daughter was diagnosed with alopecia this past June 2009. It started out as a small patch about the size of a quarter on one side of her head. At first I thought that she was pulling her hair out, but then I noticed another patch on the other side of her head, and then another, and then another, etc. We were very good at covering up the spots with her own hair for quite a while (I would say for about four months). Then school started and her hair continued to fall out. The next step...headbands! We bought them in every color possible...she is very into style. LOL! The wider the headband, the better. Of course we made an appointment with a dermatologist, ran tests to make sure her hair loss wasn't being caused by any other medical condition, tried different creams (even one from Europe), but nothing seemed to help. Her hair continued to fall out. After Halloween, we could no longer cover her spots with Headbands so the next step was hats. Her school has been very supportive and she is allowed to wear hats and other headcoverings to school. Her teacher is amazing and I made sure to send parent letters home and also purchased two books that I sent to her elementary school for all the teachers to read to their classes. This helped kids understand what she is going through. Ofcourse she still has to deal with the student(s) who are not so nice. She has been called "Miss Baldy Girl", but she understands that these kids are not truely her friends so she doesn't let it get her down. We are so proud of the way she is handling the whole situation. The other day she stood up to bullying in gym class and the "bully" said, "Oh yeah, I bet you don't have enough guts to take off your hat!" Her response was "Take That...Burn" as she proceeded to take off her hat in front of everyone. Burn???? I guess that is the new word that kids are using now! LOL! I really hope that her self-esteem continues to be high. She ofcourse has her moments of sadness, but we always tell her how beautiful she is inside and out! This past month has been very stressful/emotional. Her hair started to fall out in clumps. She was in the shower one morning and yelled for my husband and me. She had clumps of hair in her hands and it really scared her. When we brushed her hair, the hair would fill up the brush. This continued for about two weeks and now she is almost completely bald. She has very little hair left. This past Saturday we had an appointment with "Hair Enhancements" which specializes in customized wigs. The salon owner was so nice and spent so much time talking with us about everything. It was WIG 101!! My daughter then had a mold done of her head. That was very interesting. At first, I thought this is going to be messy. Are they going to have to shave her head? Plaster? I was so wrong. They used this plastic sheet that stretches when it gets warm. They pushed it over her head, allowed it to cool, and then popped it off her head...it took about 5 minutes. My daughter thought it was very cool to see the shape of her head! So now the waiting game begins....we expect her wig in about 8-12 weeks. She is so excited and I'm so excited for her!!
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Comment by Joy on November 25, 2009 at 8:56pm
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Welcome!! Sounds like your daughter is handling this all well and i know as a parent its hard to see this happen...we would rather have the pain or discomfort for them. i wish you all the best through this!
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Comment by Ronda Darling on November 25, 2009 at 10:02pm
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Thank you Joy...
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Comment by Jess (Jordyn's Mom) on November 26, 2009 at 1:07pm
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Ronda,
My daughter is also 8 but she has had alopecia since she was 2. Sounds like you have a strong little lady on your hands there. You will be surprised at how much your daughter will grow from this. Kids can be cruel my daughter has experienced that. But with great parents as it sounds she has she will be alright. You may find out that when the wig comes she may prefer to go all natural. Jordyn has 2 and prefers to wear her crocheted beanie caps ( found nice ones on ebay) she has about 15 of them. My daughter is awaiting her real hair wig fromlocks of love so she is a tad bit excited about that..You should set her up and Alopecia world account and let her speak with other kids her age..Jordyn is on here and has helped tremendously.
Good Luck and we are all here if you need us!
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Comment by Cindy on November 27, 2009 at 3:25am
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Hi Rhonda, I am mom to a 7.5 yr old daughter. She was diagnosed in May 07. Your pattern of loss is similar to hours. Your daughter has a great attitude and I am glad she is confident and not afraid to stand up for herself. She sounds alot like my daughter. Sam has never been picked on and has very accepting friends. She wore a wig for 1.5 yrs and has been wig free for 5 months. Sam knows she can loose her hair again she is fine with whatever her fate is. Keep up the good work MOM!!! Samantha also has her own page on AW if you daughter wants to get on AW a chat it up with kids her age. Sam love writing to others on here. Cindy
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Thank you Jess and Cindy...I will pass this on to Gwen....she loves meeting new friends.
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Comment by Hilary Chentow on December 2, 2009 at 11:06pm
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Dear Ronda, You sound like a terrific mom to an amazing girl! I have had AU since the age of 10 and your story brought me back. I'm 38 now. Positive self-esteem and being able to stand up for yourself...I wish I had that kind of confidence at her age. She's off to a good start in coping with the ups and downs of the alopecia journey. Your story was touching and inspirational. Thanks for sharing.
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Comment by Natalie on December 3, 2009 at 5:16am
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Your daughter is an inspiration! Thank you for telling us her story! She is lucky to have a fantastic family, and you obviously have a fantastic daughter! x
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Thank you Hilary and Natalie...I'm am so proud of her!
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