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TOPIC TITLE: Alopecia
Created On 2/12/05 8:11 PM
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alopeciasupport
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2/12/05 8:11 PM
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I am a 21 female who has alopecia for 2 years. I am baruch hashem married so aside from my immediate family no one else knows. I have never wanted to join a support group because I have a wonderful family, and loving husband which to sound off too and discuss things with, but I recently met a little girl who also has alopecia, and my view on support groups changed. It was so inspiring to see someone else who is going through with this, someone else who faces the struggles of alopecia, living the life of a hair-less person, trying too fit in and be beautiful in a society where beauty and glamour reign. It was also very helpful to discuss with this little girl's mother the different treatments that are out there and compare notes,doctors and medical advice. People with alopecia want and need to feel anonnymous, but I feel that within the frum community it is imoprtant for those of us out there with alopecia to band together and discuss treatments, doctors and of course the emotional burden that is such a strong side effect from this disease. I feel there is a lot of good that can come out of conversing, discussing and helping eachother go through this. There is not that much information about alopecia but with our bits and pieces we can bind together a support for eachother and a means of recovery. I strongly urge anyone out there who has alopecia or who knows someone close who has it to write back and together we can start something real to help eachother as we help ourselves.
Thank You and have a wonderful Chodesh.
 
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bmr
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2/13/05 3:34 PM
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It is my 15 year old son with Down syndrome who has alopecia. So I can't really say that our concerns are with "trying to fit in...in a world where beauty and glamour reign." For him, it's just one more unusual thing. He basically could not care less other than to look at himself once in a while in a mirror and say "Why bald?" I guess that's the bracha of Downs - everything's ok by him. I do know of a few girls with Downs where obviously this is more of an issue.
I am interested, however, in any info on treatments and all. I gotta admit that as cute as he is, and it certainly doesn't hurt to be good looking as a kid with a disability, his straight blond hair is sorely missed...
Thanks so much.


Edited: 2/13/05 at 3:35 PM by bmr
 
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happyjew
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5/1/11 8:57 PM
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I am a 20 year old girl with alopecia do you know of any support groups ?
 
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MagicBox
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6/21/11 6:24 PM
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i'm the same sort of age - i had a mild form of alopecia for years.. bh now my hair has finally started to grow back again! Do you still look out at this forum? Did you find a support group
 
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CAP
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6/22/11 8:36 AM
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are you looking for a shidduch? please pm me
 
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channafofanna
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6/30/11 9:59 PM
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also in mishpacha magizine (or maybe it was binah) there was a really good article...in my opinion, even though i dont have it (B"H) I can identify cuz i have trichotillomania...
 
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MagicBox
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7/4/11 2:30 PM
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I'm so sorry to hear that! How are you managing? How long have you been struggling with this? .. what age are you.
Yes, it was the Binah - they had a really good article on it!
 
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MagicBox
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7/4/11 3:49 PM
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channafofanna
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7/6/11 8:43 PM
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I had it for about six or seven years so far, i "got it" in seventh grade.(im in my late/mid teens) Sometimes i diddnt have it, my longest is a month, but sometimes its totaly out of control( actually , usualy its somewhere in the middle..)
B"H people are gulible, otherwise id be labeled a total nerd!!! thats the difference be(its the DERMatillomania that really kills me..)twein people with trich and with alopecia, its not the "alopician"s fault, it just happens, they dont pull it out. But now, i have a good excuse if someone dosent belive my first lie (the stupid one that automaticly comes out and later ur like, wow, that was totaly not belivable)
so, MagicBox, welcome to frumsupport!!!
, im guessing you (or someone close to you) either has alopecia or trich or something like that? just cuz ur here and sound understanding about it
Did the people with alopecia like that article?
 
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MagicBox
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7/7/11 7:06 PM
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You must be nearly 20? How does the disease effect you now? i really do understand when you say about the DERM part - the part that the difficulty seems to be in your control. i'm so sorry you have to go through this. Do you have any support? Are / were you on medication? Can you do anything to stop yourself from doing this? And .. is your hair indeed very thin because of it.
Thank you for your welcome! This site doesn't seem to be very active? And yes - the article in the Binah Magazine was indeed very well written and emotional..
 
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channafofanna
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7/23/11 10:59 PM
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hey, sorry it tookm e so long to reply, i dont usualy check this forum...
i am almost 18, i dont know if that counts as nearly twenty... it isnt really so much of a big deal now, idk, maybe it is. basicaly noone can touch my hari or do it or play with it (that may seema stupid rewason, but in HS, its not...) I dread lice checks in camp or school , cant wear my hair in ceertiant parts, alwasy worry abt being found out.... get obsessed wit hit, like i cant concentrate till im done doing it...so i basicaly cant stop once i start..
do i have support, kionda but not really. i have very supportive parents but they dont really get it so mcuh , they think of it more as a bad habit in my control so i more or less hide it from them, i have a therapist and pdoc, but i dont realy talk abt it with them much, just "hows it going with ur head?" and i answer, ok.. thats it... and of course this webstie...btw, i like how u called it a disease, not disorder... idk why, it just made me feel beter abt it....
im on meds, prozac and welbutrin, not realy for that but they might help with it...idk. ive tried meds but they only made me tired...
i actualy B"H have pretty thick hair(minus the bald spots, i mean)... weird, i know... but im not complaining...

this site is actualy fairly active, just not the dermatology part. go to mental health and its pretty acticve, but heres a bracha you should never even need to think about going to help urself in the forums...

what abt you?
 
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MagicBox
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7/26/11 12:46 PM
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Hey, thanks for replying! Yes, i see what you saying about this site being active .. i hear what you're saying about your hair and after reading a bit more in the sections of this site i understand better... And it is a disease btw!!
When i was very little i had these bald patches, the doctor told me it's alopecia. i've always had thin hair but at one point it went like really thin! Hair was everywhere - on the back on my clothes, my pillow, touching my hair made it come out... it wasn't very comfortable but bh now it's much better although still thin... at the time i was on medication for a auto immune disease and they weren't sure if it was the medication or the disease making my hair like that...
Talk of side effects.. but bh they never made me tired or anything (only very nauseous!) and bh i'm not taking them any longer!

 
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plony
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10/16/11 11:00 PM
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-------------------------
plony
 
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plony
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10/16/11 11:08 PM
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i have alopecia if anybody has a ? i will try to answer them


-------------------------
plony
 
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channafofanna
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10/18/11 11:27 PM
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thats so nice of you!!!
welcome aboard!!!
 
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MagicBox
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11/3/11 1:40 PM
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Channafofanna +1 to your comment! Welcome plony. Anything you want to share?
 
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