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Permalink Reply by Cinder B. Rand on October 31, 2012 at 11:06am

Good morning Laura, my name is Cinder Rand and this May 2013 will be 6 years since I have had alopecia. I was 57 when it happened and I lost all of my hair in about 2 weeks or so. Before this happened I would get very small bald spots from time to time but they would always go away and this happened very rarely. Since this last time almost 6 years ago I lost the hair on my head, eyebrows, lashes and every where else on my body and to date it has never come back. No need to share with anyone how devastating this is. I am not unique about these feelings. None of the professionals could ever figure out why this happened, what might have triggered it and so on. Was it a medication I might have taken? Was it menopause? Was it nerves, stress? We have all heard this before in some form or another. It is amazing how different so many of our stories are and to me so fascinating…but…with this said, it has been an amazing experience. I have met some of the most amazing people walking this journey. Plus I never have bad hair days any more and I can now put eyelashes on like a champ. Thank you for letting me share.

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Permalink Reply by Roma on October 31, 2012 at 11:36am

Hi,

My alopecia started when I was 14 years old, now at 40 years old I would say I've suffered 6 times intotal,

My alopecia is up and down all the time, stress, diet and lifestyle has an impact. I do hope you get all your hair back and this time it stays with you for good!

good luck Roma

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Permalink Reply by Rose on October 31, 2012 at 11:48am

Hi Laura, it's hard to decide where to begin. This is how I remember the beginning, I was 7 or 8 years old, my mother was brushing my hair when she yelled to my older siblings asking who had been pulling my hair. I feel it's important to say that my mother had just been diagnosed with cancer and given 6 months to live and prior to this traumatic news I was already living in a highly chaotic dysfunctional household. Contrary to what medical professionals/specialists may say I believe the mental and emotional stress/strain of the news about my mother was the activating event that triggered my AA. I had four bald spots (around my ears, nap of my neck and near my forehead) and for many, many years this was my experience with AA. I started "treatment" at about 12 years old (1975) and over the next 35 years I did cortizone injections, creams, and the final treatment was immunotherapy with DPCP (I was a "non-responder" and hated the treatment anyway). Throughout those 35 years I vacilated between total hair growth and 30% hair loss (same regions as always).

Then about 12 months ago I had lost about 70% of my hair and I couldn't take it anymore so I shaved my head and please believe me when I say it is the kindest most compassionate thing I have ever done for myself. I gave myself permission to "let it go" to "turn it over" to say to the world "I'm more than my hair". My surrender wasn't about giving up, it was about acceptance for what is and finding great strength in being able to switch all the energy and focus from my hair to this beautiful thing called life. Now it doesn't matter which way the wind blows or if it blows at all. It doesn't matter if my hair gets wet in public. I can do yoga, aerobics, I can bend over and touch my toes with out every muscle in my body tensing up because I can't stop myself from worrying that someone is seeing my bald spots.

When I think about the things I have overcome in my life (abuse, addiction and loss) I cannot help but consider AA a relatively small inconvenience.

Sorry if I rambled on and on...I wish you the best. I wish for all of us to have love, comfort and peace in our lives.

Sincerely,

Rose

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Permalink Reply by Rose on November 1, 2012 at 3:53pm

Thank you for sharing your story! I am inspired by you, and your courage. I laughed (because it's true, not really funny) when I read about you bending over and not tensing up because you're afraid your bald spots will show. For me, I'm afraid my wig will fall off. But I am okay with having hair loss most of the time. It is usually when I am going through something difficult and other issues are emerging when I start fixating on my hair/lack of hair situation. Thanks again!

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Permalink Reply by Anne Guarnieri on October 31, 2012 at 12:15pm

I had alopecia at about 13. One bald spot. Steroid shots and hair returned. At 50 it started again-quite extensively. I probably lost about 1/3 of my hair. Over the next two years I had bouts of alopecia with tingling and burning in between hair loss. During this time steroid shots were about the only thing that helped relieve the burn and help hair growth. I have since found that the steroid was only a temporary patch. I'm relieved to tell you that all my hair is back and I have more than ever. I no longer have tingling or burning-even during some stressful events(which seems to trigger it for me), How did I do it? With great sacrifice. I started going to holistic doctors. I now eat a paleolithic diet-no grains, no dairy. I'm gluten free always-never any cheating! Sometimes I eat rice or rice products-which are gluten free anyway but not on the paleolithic diet. I buy organic free range whenever possible. Very low sugar. I do eat fruit and very dark chocolate(80-85%), Sometimes a gluten free brownie mix or coconut ice cream. Very little alcohol-maybe a glass of wine now and then. I took large amts of supplements including vit D, fish oil, and probiotics. I've now cut down on supplements but still take the listed nutrients as old stand-bys. Supplements were prescribed by the holistic doc. My life and friends have changed in many ways. My old party friends don't get the diet and alcohol change but I can tell you I feel so much better! By trade I am a Dietitian with a Masters in Nutrition. Never would I have thought it was because the food and environment we eat and live in is poisoning us. But the more I read and research and physically see the changes for myself I know it's true. The genetically modified food that we're being sold is ver dangerous to peoples health, fertility and future. So it was a difficult path to learn but well worth it! You are a young woman and you can reverse it and keep it at bay. Read about inflammation in the body, inflammatory foods, genetically modified food, candida, the dangers of sugar, the damage that gluten is doing due to the change in grains, paleolithic diet. There is a whole new movement out there to clean up our food. It takes a while for the body to heal so don't expect your hair to grow back right away. I've been doing it for about 2-3 years now. 2 years gluten free and the last year gluten free-paleolithic. My hair is thick, full, and grows quickly. Good luck. By the way-anyone from California? Please vote "yes" to insist that companys label their food genetically modified. California is the first state to try to pass this agenda. It will be a first step in getting genetically modified food out. Europe does not allow gmo food due to the research that's out there.

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Permalink Reply by Rose on October 31, 2012 at 1:04pm

Hi Anne, I too believe that our environmental factors and the food we eat plays a significant role in AA. I am absolutley voting YES on 37!! I am a lacto-vegetarian so the paleo diet is not for me; however I eat all organic and greatly limit my dairy, flour and sugar intake. Thanks for your fabulous information, I am going to look into the parts of your plan that may fit into my life. Best Wishes. Rose

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Permalink Reply by Shawna on October 31, 2012 at 1:28pm

My 8 year ole was born with it. He is starting to struggle emotionally. Signed up on here to find some conventions or some kind of support groups for him.

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Permalink Reply by Rebecca Strobel on October 31, 2012 at 2:20pm

I wish my twin could talk with him. He went though it at a time when baldness was not something were accustomed to seeing (he's now 47). He is so understanding. If you want - I could send you his info.
:) Rebecca Strobel

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Permalink Reply by Gan on June 18, 2015 at 7:26pm

Hi Stacy, I have AA that started few months ago..

Actually it started in 2007 once, I had injection and hair grown on my head... Then I got once again in 2010... Again shot.. Hair regrown.... Now I got two spots on my head ... I just wanted to know whether naturalwellbeing medicine can help?

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Permalink Reply by Rebecca Strobel on October 31, 2012 at 2:18pm

Hi Laura -
My twin brother and I were adopted at 3 and we both had issues of hairless from that point on. My twin lost all his hair in grade school and it kept coming back in and then he'd lose it all again. Think of it - on his first date in high school - wearing a wig and a hat - his date accidentally pulled it off. He never could look at her again. I was in a constant state of hiding my spots up until age 45 when I had thyroid cancer. When I went through the radiation for it - my hair started to fall out in clumps and by the 3rd month of health - it was all gone. Eyebrows and eyelashes followed shortly after. Honestly, I feel heart sick for those younger kids going through this. It sucks - granted - when you are dealing with it anyway - but to have to be around kids who don't have the ability to be empathetic...that just hurts. If I could have hair - I'm not sure I would. My wigs (I use the Freedom Wig from NZ) are the best - but I would give anything - anything at all for my eyelashes back. Eyebrows - no biggie - eyelashes ... that's hard to fake.

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Permalink Reply by vesna on October 31, 2012 at 2:26pm

Hello,
I'm 47 years old. As a child of 3 years I have suffered from AA. I was in the hospital for about 4 months and my hair has grown, but I still had one dot that no hair. At puberty it began to decrease again. At 13 years old I was back in the hospital for about 2 months, but I soon fell again. I was 14 when I started wearing a wig. About 20-years and my hair has grown to a large area of the head, so I took off the wig. I am 23 years old with no hair again and again in the hospital. I MUSTARGEN leaflets included. The hair grew but as soon as I stopped the treatment again declined. Well, I'm here to stop fliers. I've come to terms that I'll never have hair. A year ago, I first lost the other body hair. We still have the eyelashes and eyebrows. Otherwise, this disease destroyed my life. My advice: Be strong. Best regards.

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Permalink Reply by Carole on October 31, 2012 at 3:48pm

Hi! I'm 45 and had a couple slight bouts of AA in my 30s, then 50% loss at 36 (while my dad was dying), and then Alopecia Universalis at 37 while my mom was dying. No change since the big loss 8 years ago...

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