Anyone know someone with Alopecia???

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FLchook

FLchook

Songster
12 Years
Oct 27, 2007
390
4
141
Orlando, Florida
Just wondering if someone has some informaion on this condition. My 2 year old niece has Alopecia universalis and is really starting to feel slef consious about her lack of hair.....For thos of you that dont know what alopecia is, ist basically hair loss. Lilly doesnt have a single hair on her body. No eye lashes, brows, hair nodda.......ive been searching the internet all night for some more opptimistic news. From what im reading, its seems pretty much permenant, with no real treatments. Well other then immune suppresents, which are iffy at that.

Im also looking for a support group to get her in. I think it would be good to introduce her to others like her. Rather then her always being with a sister who has beautiful long blonde hair.

Thanks for any info you can give!!
Shannon
 
I feel so much for her. Mine is thinning quickly due to heredity, not her type of alopecia, and I can't imagine what she must feel at her age. Mine started 20 years ago and is now accelerating. One of my best friends in 8th grade wore a wig most of the time because of it. It doesn't get any easier when you're 50 either, but at her age, it has to be 100x harder! Wish I could help with the support group, but I dont know of one. Give her a hug for me.
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I know someone but he did not get it until he was older. Now he is in his 60-70's. From what I understand there is no "cure" I know that it is an autoimmune disorder. I really feel for her. Maybe, just a thought, that the sister with long blond hair could get a hair cut and donate it to locks for love. They create wigs out of humane hair. I have donated hair there once and I have another batch that I need to send in.

Good luck and I hope you find a support group. I know that there are groups for auto immune diseases...maybe they would have knowledge of one for Alopecia.

Give her lots of love! That always helps!
 
My son had alopecia areana, when he was 2, we went to the dermatologist and they gave me a steroid treatment to put in his hair, it worked for him he is now 6 and has a head of hear although it will always have this weird texture to it.
 
So the steriod treatments can work. Ive heard they are painful...are they? How often did he have them? Does he still need to have them? How oftern? Everything is so vague when it comes to anything about alopecia.

Thanks!
Shannon
 
I had alopecia when I was small (before 5) and I no longer have it. I have a lot of auto immune diseases(arthritis, fibromyalgia,allergies,asthma,iritis sometimes). I am looking into a new method of treatment. There is a school of thought that says what a person eats is causing the body to attack itself. I am just starting this and it is very extensive because almost everything in the "normal" diet must be changed. I do know that when I am following the diet more I feel better and the farther away from the diet I stary the more symptoms I get. There are books on this.
 
I agree with the "you are what you eat" idea. My sis just doesnt keep with it
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Tiki....was your alopecia the universalis? Did you loose all your hair, or was it just patchy? Im just trying to figure out if there is a change of Lilly getting her hair back.

Thanks,
Shannon
 

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