Do you have a young son or daughter dealing with Alopecia and are experiencing the anxiety of worrying about how they handle it socially today and what it will be like for them in their teen years? If so, I wanted to share my story about my son (who was born with alopecia) with you....hopefully you will find this comforting.

Over the years, I always looked for positive feedback and information; I desperately needed reassurance that things were going to be OK for him as he went thru the various stages of his life. I am hoping that I can give you that reassurance with this posting.

Anything I could read or hear, that would help me to put my fears to rest, is what I grasped for. Fears such as...."What if he has no friends and is looked at as an outcast?". As we know kids can be very cruel, "What if the comments are so cruel that he isolates himself from everyone?", the worse one...."What if as a teenager he becomes so depressed that he takes his depression to the worst level imaginable". You get the picture, I am sure.

I worried ALL the time...it is what we do as mothers. ;-) Friends and family would tell me that I worried needlessly but to me my fears were real and the anxiety of it kept me up at night. If my story helps one parent from having the extreme anxiety that I had, then it is worth my time and effort in sharing my story.

My son was born with alopecia, completely bald, he is now a freshman in high school and still completely bald (he does have eyebrows and eyelashes). Over the years he would periodically make comments such as "Why me", "I hate it that I don’t have hair". He didn’t do it very often and the fact that he didn’t led me to worry that he was keeping it all inside. So what did I do??….I worried even MORE. He seemed happy most of the time, despite these comments, but I still worried.

I remember dropping him off for his first day of pre-school and the teacher telling him that he had to take off his hat as he walked into the class. I wanted to lash out at her and say…. “We need to make an exception for my son, he needs to keep his hat on!” but I refrained myself. She was aware of his situation and years later I realized that her goal was to make him feel “normal” since the other kids were not wearing hats.

Looking back on this I understand that this was actually a very good thing that she did this, sheltering him from learning to deal with his difference was not the right thing for me to do and that is exactly what I would have done during his younger years if I could have.

He is now 15 and is a very happy, outgoing individual. He has been playing baseball since he was 5 yrs old and this has become a real passion for him, giving him confidence....(which was very convenient when he was younger since this meant wearing a hat all the time, just like everyone else). He has also played basketball, soccer and football, also giving him confidence. In addition, he has been heavily involved in school activities such as band, chorus and other groups over the years.

My point in mentioning his involvement in sports and school activities is because I truly believe that these are the things that helped him not only build his confidence but also made him feel accepted by all kinds of kids and people in general. Now as a teenager, he has learned to have fun with his situation, wearing silly T-Shirts that make lighthearted humor about his alopecia….such as one that says… “Who needs hair with a body like this?”

Today he often will not wear a hat because he is proud of how he looks and takes pride in actually appearing “different”. If someone would have told me this would be the case 10 years ago I would not have believed it! I truly feel like my prayers have been answered.

My advice, to those of you that are confronted with this situation with your child, is to find something that they have a real passion for, making them feel good about themselves. In our case baseball really did it for our son. I believe, based on our experience, it is extremely beneficial to keep your child involved in as many activities as possible, as we all know, getting out in the world makes all of us stronger individuals.

We didn’t know how to handle the situation and often wondered if we did and said the right things. Reading as much as possible about Alopecia and attending a couple of support group meetings helped us out tremendously. My son never had an interest in attending the meetings so I did it on my own.

In elementary school I sent a letter to the school in order to inform the staff of the fact that he is a healthy child, that he just has alopecia. (This was suggested by the Alopecia Foundation). I do believe that this was beneficial so others did not wonder if he was dealing with a serious illness. This spread the word to our community and if kids had questions their parents would have answers.

We had a couple of instances in which he was teased about his lack of hair, the hardest years were between 3rd and 6th grade, but as he got older he learned to accept his condition and make light of it. He has gone to the same school district since kindergarten so his classmates became very acceptable of the fact that he does not have hair.

I realize that everyone’s situation with alopecia varies, based on environment and social settings. However, please know that if you have a child that is dealing with alopecia that it does get easier as time goes on. I am not an expert by any means but I believe with all of my heart that getting your kids involved in as much as possible will lead to them becoming very comfortable with their unique situation.

This is what has worked for my son and continues to work. He still has situations, especially when first meeting new people, in which he is hesitant in letting it be known that he does not hair but this is short lived and within no time at all he is sporting his shiny head proudly.

My heart and prayers go out to all of you that are dealing with a child that has alopecia, I truly understand your struggles. As parents we just want our kids to be happy and others can not understand the anxiety that having a child with alopecia may cause, unless they are dealing with it themselves.

I know that we still will have some bumps in the road with our son but with each passing year he is getting more and more confident and acceptable of his condition and I am sure your child will do the same! So close your eyes and go to sleep without the worries of alopecia on your mind!

I wish the best for all of my “alopecia family” thru-out the world. I am sure many of you have similar stories, so I thought it would be great to start a blog where we can all share uplifting insite on how we as parents and our children deal with living and growing with Alopecia.

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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 pretty 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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