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Comment by Anisha on November 1, 2012 at 4:24pm

I had alopecia areata as a child for a few years, then it suddenly stopped. I grew back twice as much hair as I lost. It was dormant for 25 years, then was likley triggered again during pregnancy. At first hair loss was slow and manageable, but then most of it came out, including eyebrows, eyelashes, and other body hair. I was referred to a specialist in Washington DC, and they put me on aggressive immunosupressant therapy, which included high doses of cyclosporin (the drug that transplant patients take so their body doesn't reject the new organ), along with intravenous steroids for 4 months, to shut down my immune system. IT WORKED. WELL. I grew back a full head of hair, eyebrows, eyelashes, etc., and shaved my legs for the first time in nearly a year. But as soon as I went off the medication (you can only take steroids for 4 months and cyclosporine for 7 months), hair began falling out again. However, it falls out a slower rate and is much more manageable than it was before the treatment. Some weeks I can even go out without a hat or hairpiece, and I now just let it go at the gym. The therapy isn't for everyone... it has it's risks - especially since it suppresses your immune system - and not everyone is eligilbe for it. But if you can get it, I would highly recommend it. Just seeing yourself with a full head of hair is invigorating, and gives you hope.

Anyway, I refuse to believe that this isn't curable. I keep hoping that it will just run its course and stop, like it did when I was 12. It might just happen to you too. Best of luck!

Comment by El Guitarrista on November 1, 2012 at 12:01pm

I don’t really come on here now since my hair has grown back. To be honest, I didn’t use this site a lot as I found that reading about other people’s experiences could make me feel worse at times.
I found myself empathising with people that had worse conditions than me and feeling guilty that mine wasn’t as serious, or it put ideas in my head that made me worry about other possible things that could happen to me…so it’s good to see someone asking for ‘hopeful stories’.
I’d always had a thick head of hair and needed to shave my face every day. (I am male by the way!)
I realise that it is a much harder condition to come to terms with if you are female, but as someone who didn’t expect my hair to fall out until I was much older, it really hit me hard at the time.
My AA started in June ’09 not long after I had been made redundant, with my facial hair starting to turn white or fall out in patches. By October ’09 I had noticed small patches appearing on my head and by February ‘10 about 40% of my hair had fallen out. I also had patches appear on my arms, legs and eyebrows. I went down the route of growing my hair longer to try and cover it, which seemed to work ok for a while...unless it was a windy day. I had to sometimes shave my face twice a day to keep clean shaven, as my facial hair grows pretty fast. (what was still growing of it)
I became very reclusive by this stage and lost a lot of confidence, choosing to bury my head in the sand, which I now realise was wrong as it just made me dwell on things rather than do stuff to take my mind off it.
By April ’10 small white fluffy hairs had started to appear in the patches that had been there the longest…and by July ’10 these hairs were starting to turn dark. Other bald patches were still appearing at this stage, but I knew by then that they would regrow in time like the others. It took about another 8-9 months for the patches on my head to all fill in with new dark hair.
By March ’11 most of the hair on my head was back to growing as normal…so about 18 months in all.
My facial hair took another 4-5 months after that to reappear…it is now all back to black!
The doctor had originally told me that once facial hair turns white, it usually never goes dark again. I am still very angry with him for this, as it removed any hope I had of it returning and made me feel a lot worse.
I have now proved this to be nonsense, as I can once again grow a beard that would put Blackbeard the pirate to shame! I made a point of telling the doctor this, so he doesn’t say this to anyone with this condition again.
My confidence has now came back even greater than before, but I am still aware that AA could return at any time. If it does though, I know that I can deal with it.
I have changed a lot as a person over the last few years and I am pleased to say that my perspective on life has also changed for the better.
I now avoid stressful situations when possible and find myself able to take a step back and not get so worked up by the trivial rubbish that used to get to me before.
I now have much more consideration and compassion for people worse off than me and I will not tolerate anyone being made fun of for any condition they have.
I suppose I have grown up in a lot of ways.
All the best to everyone on here :)

Comment by KG on November 1, 2012 at 12:00pm

Hello everyone. If inspiring stories are what you want then look to Kayla Martell for inspiration. Kayla Martell is an incredibly resilient individual. She was diagnosed with Alopecia when she was 11 and has not let it slow her down. She didn't let it stop her from competing in the Miss America Pageant and was voted Miss Delaware 2010 and a Miss America Pageant Finalist in 2011. Check out the links below to find out more about Kayla and her journey. I wish you all the best!

Kayla's Blog

Kayla's Twitter Page

Kayla's FaceBook Page

Comment by asdf234 on November 1, 2012 at 8:50am

Thanks blackturtleneck, that was very helpful info on black mold. It may explain why I lost my hair and why the antifungals worked to stop the hair loss. Also, that IUD comment was very helpful. I do believe there was a link between when I stopped having thick hair and when I started the pill. It got thicker once I went off it and had my first child.

Comment by Jennifer on November 1, 2012 at 6:23am

Very sorry to hear that you're feeling down. I developed Alopecia Areata suddenly in July, with no apparent trigger. I first found a small bald patch on the back of my head, and it quickly grew to about 3 inches in diameter. A week later, another bald patch formed on the top front of the right side of my head. I was told it's autoimmune, and prescribed a corticosteroid lotion to use twice daily. It helped with hair regrowth but about 3 months later, I've just had my first appointment for scalp injections and most of my hair has started filling in.

Something very important happened recently thought. My husband and I discovered that the apartment we'd been living in for the last 2 years has an extensive but well hidden black mold problem in the walls. Emergency construction to fix a water pipe revealed the problem. Black mold explains why my immune system went nuts because shortly after developing alopecia, I also developed asthma, chronic body aches and pain in my joints, an awful sensation of burning and tingling on various parts of my skin. Blood labs confirmed systemic fungal issues.

Thankfully we're no longer living in our old place. Two weeks out and I have no symptoms of asthma, my body aches have disappeared, and my skin feels better. I have an air purifier set up in our new place, and all our stuff has been cleaned. My hair has been coming in steadily.

To anyone who has suddenly found themselves afflicted with AA, AT, or AU, and developing other symptoms of illness relating to the immune system, check your living quarters for mold. Seriously.

Comment by Visitor on November 1, 2012 at 3:15am

I have a nice story. While I was going through chemo (breast cancer), I met a very nice woman. She was a friend of a friend's. I didn't like to wear wigs or scarfs. I perfered to go out bald. Big jewelry, bold make up..I met my new friend at a dinner party. My new friend lost all of her hair right after she had her child, in 2009. The doctors all believed her hair lost to be Alopecia...We were the only hairless women in the room. :) She decided to start going out bald....don the big jewelry... she looked wonderful. She said I had inspired her.

Well, our once common bond was soon to come to an end. My hair was starting to grow back. My jewelery a bit smaller , make up a bit lighter. As my health was improving - and I had started Tamoxifen - I needed to find a hormonaly safe form of birth control. My doctor suggested the Mirena IUD. Well, when I read the warning that no one having or had breast cancer should use this IUD I was shocked that my trusted doctor would even suggest it. Baffled, I went on my support site breastcancer.org and found others just as baffled by their doctors pushing towards the Mirena IUD.

Here is the great part of my story. Before checking with my ladies at breastcancer.org, I had been at a party where my new friend and I were talking birth control. She said she loved the Mirena IUD...long story short while reading what my ladies had to say about the Mirena I found one member mentioning the side effect of Alopecia. Yep, you guessed it. I was up all night researching this link. If you look up our thread "Mirena IUD?" You can read all our findings. Lets just say the Bayer company -maker of the Mirena IUD had two very different listed side effects info for the doctors packect vs the patients packet. Plus doctors were putting in the Mirena IUD right after the birth of a child. As in my friend's case. NOW the maker of the Mirena IUD says their IUD SHOULD NOT be used in women who are breast feeding/ had just given birth.

I called my friend first thing in the morning. She had told me how she thought the IUD could have been at fault but several doctors all told her that was not possible. What I found very interesting - if you were to read the patients' info packet you would see the side effect loss or growth of hair ... the doctors' info packet actually lists the word Alopecia. How her doctors, and from my research - countless other womens' doctors have failed to acknowledge the Mirena IUD factor is horrible.

The end of this happy story - I shall be buying hair clips for my friend for her holiday gift. She has hair! Plus her mood swings have lifted (also a Mirena side effect). In her case, years of extensive medical treatments...and it was all solved in one night reading a forum. The internet is great. If you have the Mirena IUD please check out our post on breastcancer.org

Comment by MariaR. on October 31, 2012 at 2:38pm

Hi, Tracey. I lost all of my hair when I was 3 1/2. When I was six, it came back. From six until twenty-three, my hair was pretty good. I'd occasionally get a bald patch, but then my doctor would inject it with steroids, and it would fill in. Starting at twenty-three, my disease became much more aggressive, but I could still manage it. Three years, though, my husband and I separated, and all of my hair fell out. That was really rough. However, I had a doctor who treated me very aggressively with methotrexate (25 mg/week), cortisone injections (probably about 100 all around the scalp every month), and oral prednisone (varying amounts, but usually 10mg/day unless I was having a flare-up). My hair completely returned. However, I have since moved, and thus I had to change doctors. This is my first time ever posting on here, and maybe someone here can give me some pointers. My new doctor is much more cautious, and last month, I had elevated LFTs (liver function test levels--I need to check these because of methotrexate). While my general practitioner said my LFTs were not very elevated and I should stay on methotrexate and just keep vigilantly monitoring them, my dermatologist disagreed and pulled me off cold turkey. That was three weeks ago. Today, I am almost entirely bald. I am shocked, saddened, and terribly depressed. One month ago I would never dream that I would be this far gone today. My dermatologist said she doesn't do contact therapy, which I think would be the next logical choice, so that's out. Does anybody know of any other aggressive treatments where the liver isn't involved? By the way, thank you for saying something about hormones. I've routinely mentioned this to my doctor (when I was twenty-three (which was when my disease got a lot more aggressive), my menstrual cycle went wacky, and I've always wondered if there is a connection), and I think I'll have to more aggressively mention it.

Comment by Mommito3 on October 31, 2012 at 2:25pm

Hi Tracey! I just wanted to share with you that I had been diagnosed with AA at the age of 30 in the month of January of this year. It hit me and my family out of nowhere! It started on the top of my head and with the Dr. that I had, he offered little treatment options for me. I changed doctors in March bc at that point the whole top of my head was completely bald. My new Dr. immediately sent me to a dermatologist and steroid injections were inserted that day! With 20 shots each visit every 2 months, I am happy to say that I have regrowth and is almost 2 1/2 inches long!! I wear hats from time to time and even wigs to my childrens schools but over all I feel normal again and have hope. It was and is at times an emotional journey. I continue to spread awareness to all everyone and am 'living' again. Thanking God each day for my supportive husband and family. There is hope!!!

Comment by haley on October 31, 2012 at 2:21pm

i loved the story of how the woman did the tatooe, my grand daughter has alopecia all over her body. she lost her hair at 4 and she is 12 now as of oct 12. she doesnt like the wigs says they are itchy and give her a headache. as a parent you would rather have something like that to happen to you and not her. you would probably know how to deal with i better than a 4 or 12 year old. but thats not what god wanted. haley is a smart and pretty girl. she makes ab honor roll and she was blonde with the bluest eyes that people would love to have been borned with but wasnt. i dont know people go thro this and i pray every day that someone will find a cure for it so no one has to ever go thro this again.it is heart breaking .good luck to every one

Comment by ziba on October 31, 2012 at 1:27pm

Hi all, I also been dealing with AA for a while now, speaking of hopeful stories, I ran across this one in one of my searches, it's inspiring, www.indiegogo.com and search "Window of hope for all alopecia children", PRETTY AMAZING.

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