View Full Version : Alopecia
New here so thought I would ask if anyone was in the same boat.
My son who is 2.9 has been diagnosed with alopecia universalis, he has no hair anywhere on his body and apparently will never:crying: There (file://\\here) is remission where it can grow back but its very unlikely. So far in the 8 months he has had it not even a single hair has grown:confused:
Just wondering if anyone is in the same situation.
Any replies would be great :o
Firstly I am really sorry about this, it is such a shock when we are told our little people have something to deal with.
A woman at our work has this condition. I have known her for 5 years now, and it was not until 2 years ago that I actually found out. And the only reason I found out was because I was commenting on her new haircut one day and one of the other staff members pointed out to me that she in fact had bought a new wig.
Now that I know, of course I was curious and looked at her a bit more closely. In fact there is nothing to notice. She wears a lovely wig and has beautiful soft smooth skin. She has boyfriends who I imagine she must tell about this condition, and it has not seemed to affect her popularity at all.
I know that being a boy it is different with the body hair, but to have no hair on your head for a girl must be a pretty hard thing to take, and she is fine.
Anyway, I just wanted to let you know that there are others out there in your boy's situation.
Big hugs to you both.
I just read your post and although I have no personal experience with my child having this condition I can only imagine how upset you are. :hugs: and hopefully there will be another mum out there that has gone through similar experience to help you out.
One of my best friends has alopecia and he copes with it rather well. He actually finds it a winner with the girls ;) . He is actually now going out with one of our other good friends. I'm not sure what form of alopceia he has as he used to have hair and it wasn't until puberty that he lost it. Now and then he has a burst of hair growth on his chin or his head and he hates it. He really loves being hairless. Its a part of who he is and he really is a beautiful soul inside out.
Keep your chin up and hugs to you and your family.
I'm so sorry to hear what you and your DS are going through especially him being so young and unable to fully understand.
I was 13 when i was first diagnosed with Alopecia (stress related alopecia) so it was pretty hard going since i just started highschool. My hair fell out gradually over the course of 7 years so i was able to hide it up until then. I was taking different forms of natural tablets but didn't seem to work for me but i have heard it has worked for others. After i had my ds1 it got worse and my self esteem plumited as you could imagine. Over the last 4 years it's been up and down but i think thats because i havent given my body a rest. I also found that once my hair grew back a little more i was able to get real hair extentions (which was very costly) but seemed to help my hair grow ALOT.
I imagine that boys/men are able to handle alopecia alot better than women do. I use to get stared at alot which i became very frustrated with until i realised that i couldn't help my situation and then became a stronger person within. It's just something you eventually cope with.
When your son reaches the age of being able to understand, always remind him that hair doesnt make a person who they are, it's whats inside.
Keep your chin up and goodluck :hugs:
Thanks so much for the replies, appreciated you took the
I think the main thing with Jai is, his alopecia has happened so early in his life, it is quite rare for a child this age to have alopecia, let alone alopecia totalis, so its quite distressing to know there arent many out there to talk to.:no:
He copes with it fine which is the main thing, and we have later said after the inital shock that in a way if he was going to have alopecia its good at a young age as he will get use to it.
In saying that though, kids can be very cruel:mad: so thats our main obsticle, getting through his schooling.
We will be much mroe aware and prepared though by then, hopefully with the aim of creating an awareness about it in his school/high school.
Anyway, sorry for the ramble:eek:
I think there is a V8 Supercar driver called Dean Canto who has this condition.
Perhaps you could look him up on the net. He may be a good role model for your son.
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