New to the group! Hello!

Stacee - posted on 01/26/2009 ( 6 moms have responded )

19

5

0

Hi! I just found this group. Mey daughter is 9 and has had Alopecia since she was 3. For the last year she has had no reoccurance, however I am certain she will soon. It always happens when some big change takes place. The next one is from elementary to middle school. For the first several years was a yearly process around winter time, then it began to change pattern and then it seems to have gone dormant. My daughter deals with it all in stride- it's just a part of her, however I always wait for the next episode. It definatly hurts me more than her. Kids are great like that.

6 Comments

View replies by

Helen - posted on 04/20/2009

5

11

0

Hi Stacee,
I am worried about the same thing. My daughter will be going to middle school as well. Hers was pretty much yearly too. Once it was a year and a half. I am hoping once she finishes maturing it will slow down or stop altogether.
You are right I think it bothers us more then them.
Take care

Helen - posted on 03/29/2009

5

11

0

Hi My name is Helen and my Daughter Victoria has had Alopecia areat, totalis, and Universalis.  It time it comes it is different.  The first time she was in Grade 1 and she lost it in small spots.  The second time her hair fell out quite rapidly and it was devastating for me.  That time she lost all her hair everywhere.  The time after that small spots again.  And this time fairly large spots.  The time between hair loss always changes.  At first it was aapproximately a year between the two loses.  The third time about 1 1/2 years.  But between the 4th and 5th time only a matter of months.  Her hair started falling out again at the same time it was growing in.  Also each time it grows in.  It grows in differently.



You are right in saying not too many people know about this Alopecia.  That is why we are doing the best we can to inform people.  My daughter and I did a newspaper article on Alopeica that was distributed throughout Scarborugh, Ontario, Canada and Etobicoke, Ontario, Canada.  We wanted people to know about Alopecia and that it was not cancer because that is the first thing people think of.



My daughter dealt with it fairly easily as well when she was younger but now I can tell it bothers her.  She is at the age where she has become more girly and finds that the Alopecia hinders her appearance.  She likes to dress up, do her hair.  All the things young girls at her age should be doing.  However, she always wears a hat and it is hard to find ones that fit properly and that she likes to match all of her outfits.  She has too much hair loss to do combovers or to clip back.



She gradutates this year from grade 6 and we are hoping that her hair will be back by June.  Otherwise she will have to wear her wig.



No matter how beatiful people say she is without hair she still really wants her hair back.



She doesn't want anyone to see her without her hat.  She only goes without her hat at home, around family or her best friends.  She is also getting tired of answering peoples questions because they are always the same and she has been answering them for so many years now.



The second time she lost all her hair, we shaved it and she went around with a shaved head for the longest time until it started growing back.  This last time is very different because of her age.



I need to find a way for her to feel more confident about herself whether she has hair or not.  Unforunately, these days alot of emphasis is put on your appearance.



Thank you for listening to my story.  I encourage everyone to stay strong and we can as long as we have each other.



Helen



 

Amanda - posted on 02/04/2009

7

9

1

Hello, I just joined the group today and thought I would reply. My daughter is 11 years old and has had alopecia since 1st grade. She too, has had many occurences with regaining and relosing her hair. It is very hard for me as well. She doesn't seem to mind as much now as she did at first. We have started a new tradition over the past few years that really seems to help her deal, we go every new school year and she gets to pick out her new wig for the school! She loves it! It has become something she looks forward to every year. I am like you when it comes to preparation though, she has almost a full head of hair for the first time in many years and I, too, am waiting for the day that it starts to fall out again.

Tracy - posted on 01/30/2009

6

0

0

Hello Stacee I am new too.  My daughter is 8.5 and has only had it for a few months.  She is losing hair daily.  It doesn't bother her too much either.  It really is much harder for a parent.  

Stacee - posted on 01/26/2009

19

5

0

Thank you. Yes she does take it all in stride. I on the other hand can't bare the thought of her losing her hair again, and I know it WILL happen, just never know when. She has had some little patches that cover easily lately so, the big one isn't far off. It's been hard, not enough people have a clue about Alopecia. I try very hard to spread the word. Thank you for your kindness. I am sure I can find comfort here!!

[deleted account]

Hello! And welcome to the group. We are a small crowd here, but I have found a great deal of comfort here. We live in a small town, and really only know 1 other individual with alopecia areata. (Who has had a full head of hair for quite sometime now).  And its a relief to be able to correspond with other families out there going through similar experiences. Most of the time I know that when we go out and about that most people are assuming that my daughter is going through treatment and if they ask questions, most have no clue what alopecia is. 



Its just nice to know that you are not alone. I see from your post that your daughter takes every occurence in stride, I think thats great! Sometimes I think kids can almost handle some of this stuff better than adults. I think alot of the time it does hurt us more than it hurts them. 



I just wanted to say welcome and I hope you find comfort here, I know I have.

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms