Parents of Children with Hairloss


Parents of Children with Hairloss

Here you can talk amongst other parents about treatments, highs, and lows.

Members: 583
Latest Activity: Dec 2

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Discussion Forum

Help with FDA response from those in US with alopecia - by December 5

Started by Marianne Peterson Nov 10. 0 Replies

Need help from anyone who lives in the United States and has Alopecia.I am the legislative liaison for the National Alopecia Areata Foundation in Massachusetts.  We have an action alert out that we…Continue

Looking for the kids with alopecia at Jenkins Middle School in Colorado Springs

Started by Sara and William. Last reply by Pearl Sep 12. 1 Reply

My son and I are moving to Colorado springs this school year to join his dad, who has been there for a year and a half now.  My son has alopecia, and naturally I was concerned.  Both times he's gone…Continue

My 5yr old daughter was diagnosed with alopecia and Dr. pretty much gave me no hope

Started by JEANETTE. Last reply by Daphne Aug 21. 13 Replies

Once he gave me diagnoses i started to ask for treatments however he pretty much advised me on wigs.To be honest i didnt know what questions to ask can their be alternatives etc? her father has…Continue

Tags: and, all, advice, Any, her.

Kids head covers?

Started by Lori-akaMimi. Last reply by MummyWendy Aug 5. 8 Replies

Hi All! My six year old granddaughter is rapidly heading to AT  :-(  I have been searching for child size scarves, turbans and/or knit caps - with little luck. Right now, I'm specifically looking for…Continue

Bullying at primary school

Started by MummyWendy. Last reply by Bonnie Fimiano Jun 20. 3 Replies

Over the weekend my 8 yr old daughter confided in me about a number of instances at school last week in which she was bullied about her hair loss.This included an older boy who repeatedly pulled her…Continue

Tags: Confidence, Bullying, School

Comment Wall


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Comment by Lynn AKA Mom of 2 w/AA on July 29, 2014 at 9:56am

Hi all!  Someone recently sent me a private message - it went to my personal email - but I am not sure how to respond.

My daughter will be a senior in high school & my son a junior in high school next year.  Neither one of them has had AA for about four years now :o)  Also - I have a friend I met at this site and her son has not had AA for that amount of time :o)  Hang in there and have hope!

Things I did differently:  Cooking more vegtables and making sure there is no mold in the house.  Love to you all & best wishes always!

Comment by jayden thompson on June 23, 2014 at 10:39pm

I just wanted to share with Alopecia World that, a doctor is treating people with Alopecia with a arthritis drug and it is growing hair back however it is not a cure but when I get more information and a link to his website I will post it.

Comment by jamom74 on June 23, 2014 at 10:37am

My daughter will be 12 and was just diagnosed with AA but there is also some hair twisting in the front that she has made worse it is very emotional time we don't understand what is happening and feel so out of control - :-(..  We are in NJ does anyone know about a support group in NJ we are more North Central.  My heart breaks for these kids that need to go through this.  Growing up and teenage years is hard enough and they have to deal with this.  I am so glad I found this group.  God Bless!

Comment by MomLynnne on June 23, 2014 at 9:52am
So proud of your beautiful girl. Mine is 10 and just diagnosed but in denial.
Comment by Janice on January 30, 2014 at 5:51pm

So today was the day that my daughter decided to share with her class that she has alopecia. I was there early to pick her up to go get some blood work done. I got to see her tell her class. She did a great job explaining it. Now she says that she will not feel like she has to hide it at school. Today was a great day! There have been a lot of not so great days-  but today was a good one! Just had to share! Very proud!

Comment by Janice on January 27, 2014 at 12:01pm

My daughter is using head bands right now to cover her spots. I am wondering what hats etc are best for using after the headbands are not longer doing the job?Yes she knows she has Alopecia. We talk about it with her. She is getting ready to tell her classmates, but is not there yet. So just wondering what works best.

Comment by Mystery mom on January 23, 2014 at 11:49pm
Hello parents just wanted to share my story and see if anyone has a similar one. My daughter as as an infant lost her hair and eyebrows around 5 months of age and her regrowth took long to come in. The regrowth was dark and wiry and coarse but her eyebrows are spare. Her hair is pretty thin but you couldn't tell because it is so "puffy" because of the texture and sticks up all over the place. We get lots of stares and sometimes comments. We met with the amazing ped. dermatology group at Columbia Presbyterian and also met with Dr.Christano. We are awaiting a diagnosis..but it is leaning towards Marie unna Hypotrichosis and most cases report complete loss of hair in the first decade of life. Has anyone ever heard of Marie unna?? I hate not knowing what will happen to her.
Comment by Janice on January 15, 2014 at 7:30am

Hi My daughter was diagnosed at 2 with AA. She is now almost 7 and has been lucky that she has only had a few patches here and some bigger and most the size of a quarter. Usually she has been sick with a cold and that is usually when the patches show up- until now. Right now she has lost alot of her hair on the top and right hand side of her head to her ear. And spots on the back of her neck. No sign of a cold or flu. if worries me that she has had no cold or I guess reason for her hair to fall out. it has never been this bad before. Now just wondering if anyone else has had this happen. I am also looking for help on preparing her to tell her classmates. My daughter knows she has it and is for the most part has accepted it pretty well. As she has been pretty much spot free she has had no need to tell her classmates. I am trying to help prepare her to tell her class- but wondering if anyone has any tips to make this as stress free for her. Her teacher is amazing and supports us 100% so I know if there is any hurtful comments they will be dealt with. Also wondering if anyone lives on or near PEI, Canada with AA?

Comment by HSchram on November 4, 2013 at 2:33pm

Hello, my son is 15 years old and was diagnosed with AA in May.  I am looking for others who may have children or teens who are dealing with AA.  I hear about support groups but am uncertain if there are any with just children or teens. I would think they would be more comfortable sharing with others in their age range than in a group with all  adults.  I live in Northern NJ (Morristown, Morris County area).  I posted this on New Jersey group as well.

if you have any information or any ideas please reply. Thanks!

Comment by Annette on October 21, 2013 at 3:11am

Hi - I am a mother of 4 children (13, almost 12, 9½ and 5 years old) - three of my children have alopecia:

My daughter got one spot 3½ years ago (1 cm) - it is still the same size and she didn´t get any other spots (she was 8 when I discovered her spot and she never get a treatment).

My oldest son (now 13) got 3-4 spots when he was 7 years old - and they were pritty big. He got a kind of light-therapy and all hair came back within a half year. About one year later he got 2 spots again - but no treatment - and all hair came back anyway. Right now he has got all his hair.

My youngest son (9½) got 1 spot 8 weeks ago (ca. 1 cm big) - he is loosing some hair but you can´t really see any difference.

(My sister in law has alopecia universalis).

I really hope that we are lucky and that my children "just" have alopecia areata and not totalis/universalis..... But WHO knows??


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