Adults who have grown up with alopecia


Adults who have grown up with alopecia

This is a group for people who had alopecia nearly all their lives. The people who grew up with alopecia as children and still have it now as adults.

Members: 287
Latest Activity: Apr 28, 2022

Discussion Forum


Started by Donna. Last reply by Donna Mar 17, 2012. 3 Replies

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Comment by Jody Gorski on April 18, 2017 at 10:43am

I have had alopecia since I was 9 years old.  It was such a struggle as a child.  As an adult I feel it has made me a stronger more resilient person.  I no longer am angry at my alopecia and feel it is just a part of me.  It helped me become such a strong person. :)

Comment by Margaret Brennan on September 30, 2015 at 12:20pm
I had AA until age nineteen, started t age two, then I lost it all. Between the torment in grammar school and being treated not so nice in high school by a bunch of snobby Westchester County girls I really felt hopeless. But I was very outgoing and I believe that saved me. I met a very nice man in a community theatre group and we have been married for over forty years and have four wonderful children who tend to be more sensitive to the needs of others. I still am in my own closet of torture and only come out to those I really trust or at the NAAF conferences, our support group really helped to free me up since until that time I really did not know other people had this disease. Get your self to a support group., it will help you tremendously.
Comment by Hopeful1 on September 30, 2015 at 10:20am

I am looking forward to attending a support group in NYC in the near future.  Just missed one in August, 2015.  It really helps being able to talk about it with others who understand and are experiencing the same situation and emotions.  I to wish this was around when I was a kid. I was taunted relentlessly in school by a few, one girl in particular.  It wasn't fun!

Comment by Hopeful1 on September 30, 2015 at 10:16am

Elisa!  I am the same exact way.  My alopecia started when I was 13 years old with a spot. Then had to wear wigs at 15 years of age. Then it grew back. Then complete loss in my 20's. I have been dealing with this for over 20+ years.  I find it hard to open up and share my secret with others.  Aside from immediate family knowing only 4 friends know. 

Comment by elisa on September 8, 2015 at 6:18pm
Hello i have had Alopecia all my life i Have so many wigs this is my first time talking about it I'm so shy and introverted people don't understand I stay to myself a lot
Comment by Margaret Brennan on May 12, 2015 at 7:41am
I think this is some one trying to sell something. Vitamins do not make your hair grow... I have been down this road over my seventy years with this disease. Spent money on all the hocus pokus.
Comment by Deeann on October 19, 2013 at 4:19am

Hello all.  I've had AU for the past 8 years, and AA since I was 7.  I've been working on a book for several years, and it's really starting to take shape.  

I've just finished my website for "Head-On, Stories of Alopecia", and it can be seen at  I'm looking for stories from men, women and children to add to the phenomenal ones I've already received.  

The alopecia community has always been so supportive of one another, and my hope is that word of this project will spread like wildfire. I look forward to hearing your story.

Comment by TallGuy on January 8, 2013 at 2:40am

Have been almost entirely hairless for most of my life.

Had AA from the time I was 5. Inherited from my mom's side. My folks were determined that this not define me, also got me enrolled in some cutting edge programs at the time - for example I was patient #16 in the UpJohn 5% Minoxodil trial, first kid in country accepted. Finally shaved everything off at 17 and haven't looked back. Learned from some wonderful people that have come in and out of my life over the years...inspired me, gave me strength and helped form me into the strong, confident 35 year old person I am today.

Comment by PC on October 12, 2012 at 8:29pm

The Chino Support will have a booth at the Citizens Business Bank Arena food truck event in Ontario on 10-20-12.. In an effort to bring awareness to the Inland Empire community we will be passing out information and brackets. From 11am to 6 pm, address 4000 E. Ontario Center Parkway, Ontario CA 91764. Please join us to help get the word out.

Comment by mardy on July 23, 2012 at 1:12am

this is so me and the thing is it doesn't get any better you just learn to deal with it.. it's great to have a group like this.. wish it was around when i was a glad kids now have support groups to help them out.. when i was a kid they weren't sure how to even treat it i was like a guniea pig poking and proding it was like the unspeakable in my family a hidden secret...


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