I need someone who knows what I'm going through/been through

I've had alopecia universalis since 2006 and have been going through it with no one there to understand exactly what I'm going through. I have support, just no one who truly understands what it's like. It's taken a lot to get me to come on this site, but I realized I can only be strong for so long. I need someone who knows.

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Permalink Reply by Ashlee on November 9, 2011 at 4:52pm

 

Permalink Reply by Angie on November 9, 2011 at 7:26pm

We know Jen. This thing is hard. We got you now, your in good hands. Try not to keep looking back. I'm glad you found us, we are here for you. We all understand good days and bad. You have a big family now. Lots of brothers and sisters. How cool is that! We never get tried of hearing about it, each story is a new on, so pleaes try us.

Hugs X10

Permalink Reply by angie on November 9, 2011 at 9:16pm

What has helped me is I tell myself that things could be worse. I could've been born in places where woman are still considered property and don't have any freedom. I have hope that science will find a viable treatment for all causes of hair loss and no one would have to suffer this pain ever again. Hope this helps, Angie.

Permalink Reply by Megan O'Hehir on November 10, 2011 at 1:57am

HI Jen
My daughter has AAT and has been completely bald since last year. she lost all her hair in three weeks. We were really scared by what all this meant and spent many hours asking why? but I have come to learn that there is no answer and that we had to simply accept it. This has been so hard and my husband really gets upset when people look and stare at us. We have also come to accept that there is not really a treatment that we know of here is AUS. but the plus side is that we have met some amazing people who are all in the same boat and that has given us much needed comfort and support. Reach out to people who know what it is like and reassure you that you are not alone. Sometimes just talking about it does help to get all the frustration out. Always at the end of an email should you wish to vent.

Permalink Reply by Was khan lodhi on November 15, 2011 at 11:22pm

hi my name is juan i am based in malaysia from last three years i got this 10 months ago now i fully recovered and it took me four months to find out how i can get rid of this and used every way possible but i find the cure and now happy living and want to help other who can also recover from this my mobile number is +60102526429 and if need advice can call me or message me its never too late and its cureable.

regards juan

Permalink Reply by Jessie on November 10, 2011 at 7:38pm

HI Jen, people don't understand and never will unless they personally have it. I have had alopecia since I was 5, now 42. It progressively worsened as I got older adn had children. I remind myslef that this is nothing I have control over and neither do you. It's like people born iwht freckles as opposed to perfect skin. It is completely cosmetic, although that doens't make it easier to digest. I emind myslef how grateful I am to be healthy and have a wonderful family. My friends all are aware of it but still make stupid comments like" you should change the style of your wig" and why even care what people say, I wouldn't wear a wig, or the best I would have a differnt style for every day...really??!! again its been decades for me but when I wish upon that star I still wish for hair. I do indulge when we go on vacation and do not wear a wig but a bandana or scarf. I get the pity looks but I dont care since I don't know these people. I have tried every possible treatment, some worked for a while some did nothing. But I am always hopeful. I know this is hard but remember you can walk and what someone in a wheelchair would give for that. Also it is becoming more known and one day will not be a secret that everyone assumes your sick if you have no hair. Good luck
Jessie

Permalink Reply by LeslieAnn Butler on November 10, 2011 at 11:10pm

Hey Jen,
I have had AU for about 25 years. Let me know if I can help. I totally understand.
Leslie Ann

Permalink Reply by Liz on November 11, 2011 at 10:28pm

I'm glad you joined us. Although no one can understand exactly how another person feels, at least there are people here who can relate. I am 52 years old and have had a hair loss problem since I was in my 20s. I enjoy wearing wigs and have fun trying different styles. As long as I am wearing a pretty wig, I usually feel pretty good about myself.

Permalink Reply by Brittany R. on November 14, 2011 at 4:13pm
Please let me know if you need anyone to talk to! I've had universalis for sixteen years now. I definitely know what it's like.
Permalink Reply by Was khan lodhi on November 15, 2011 at 11:14pm

hi my name is juan i am based in malaysia from last three years i got this 10 months ago now i fully recovered and it took me four months to find out how i can get rid of this and used every way possible but i find the cure and now happy living and want to help other who can also recover from this my mobile number is +60102526429 and if need advice can call me or message me its never too late and its cureable.

regards juan

Permalink Reply by ROSE WOSE on November 16, 2011 at 10:13am

HELLO ALL, not to shed a cloud over all this discussion however after having alopecia universalis for 33 years i find it hard to read "its cureable " without having someone write the cure in the discussion........ lots of us have been there done that...had/have our lows and we have come out on top feeling fabulous about who we are hair or hairless.....if there is a cure Was khan lodhi tell us...if you are not prepared to share then please don't break our spirit!!!!

Permalink Reply by Was khan lodhi on November 15, 2011 at 11:16pm

hi my name is juan i am based in malaysia from last three years i got this 10 months ago now i fully recovered and it took me four months to find out how i can get rid of this and used every way possible but i find the cure and now happy living and want to help other who can also recover from this my mobile number is +60102526429 and if need advice can call me or message me its never too late and its cureable.

regards juan

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