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Georgia Van Cuylenburg

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How I Coped With Losing All Of My Hair -- At 21

Posted: 10/27/11 09:19 AM ET

Most little girls have a very special connection to their hair. When I was growing up in Australia, I was always trying to make it the best hair it could be, and sometimes I got it a little wrong. The day before the first grade photo I decided I didn't want bangs, so I took the scissors to them. In fifth grade I shaved my eyebrows off and told my Mother they fell out. And in 6th grade I decided an under-cut was a good idea ... wrong!!

By the time I was 16, my hair was down to the small of my back, and my natural golden highlights were the envy of all the girls in my class. Body image issues plagued me in high school, but the one thing I loved about my appearance was my hair. When I was 18 I got asked to be a hair model by a famous hair salon, and my hair became even more the thing that I identified as ME. I was now officially "the girl with the great hair."

Three years later, my "great hair" and I were working in L.A. I told jokes, did TV and film, often on shows for children, helping them believe in their own 'magic.' I loved my new life.

Then one typical Wednesday, as I stood in the shower, I watched as hundreds of my 'great hairs' washed down my body. As I rubbed the shampoo through my hair, clumps fell out in my hands. I was too scared to get out of the shower because I didn't know what I would see in the mirror. When I finally did look at myself I could see spots of bare scalp peering through my hair. As I brushed and brushed I watched my clear white sink fill up with hair. I remember seeing myself in the mirror and holding back the tears. That day my life changed forever.

I told myself that there must be a reason why this was happening. I shouldn't waste my time feeling sorry for myself, I should just find out why. Over the next year I put myself through dose after dose of steroid and cortisone injections. I had the most horrific form of acupuncture imaginable. I ate every food, supplement and vitamin that you find when you Google 'hair loss.' But all the doctors I had visited were right: I had Alopecia Areata, an autoimmune disease where the body rejects its hair. There is no cure.

That first year I hid my Alopecia Areata. The few people who knew insisted that I should keep it a secret because no one would hire me. I wore a terrible wig that looked and felt like straw. It was so bad that I always wore a hat. (Believe me, a Californian summer spent in a wig and hat, on top of an ointment that creates constant 'sunburn' on your head, is a very painful and sweaty affair.) I couldn't work in front of the camera because I couldn't take my hat off. I wouldn't let men get too near because I couldn't work out how to explain why, no matter how many items of clothing came off, the hat had to stay on. That was probably the toughest year of my life.

I knew something had to change. I had lost so much of myself. I was no longer the girl with the great hair, and lying all the time was exhausting. I have never been one to avoid the truth. My work involved encouraging children to love themselves ... just as they were. Yet here I was hiding who I really was.

It was that realization that changed everything for me. I decided to stop seeing my Alopecia Areata as a burden, but rather as an amazing gift. I had always wanted children to feel that I really understood when they spoke about being different or alone. And now I had a big 'signpost' on my head that said "I GET IT!!!"

I started sharing my story with children, and I could feel an amazing change in the way they responded to me. When I started working on a documentary about the experience, kids and adults from all around the world emailed me and shared their stories. It wasn't just Alopecians; people with all sorts of 'secrets' started confiding in me. Almost everyone I met had a secret to share with me. Because I was standing before them saying, "this is me," they felt they could do the same. And very slowly, I learned to trust I was good enough as I was, that it was the essential me that people -responded to -- with or without hair.

Not every moment of honesty has been joyful. Dating in particular has been rough. I now tell every guy on the first date. I don't want to go a second date with someone who sees me only as 'the girl with no hair.' I'd rather wait for a man who can see the strong person I have become because I have no hair. Alopecia Areata has become my Man Meter.

Over the last three years my hair has come and gone. Sometimes I have it and sometimes I don't. I now have a cabinet full of wigs, but most days I prefer just to wear the hair I have. I am very excited about the progress being made towards a cure for Alopecia Areata, and I hope one day it is found. But I can't say that I wish I never had it because of what it has brought to my life. Without my Alopecia Areata, I never would have seen the difference that being honest about yourself can make in the lives of others. I never would have met so many truly beautiful people and through them learned that I am beautiful, too. I never would have really believed that something I thought was a tragedy could fill my life with purpose.

Today I have about three quarters of my hair. I don't have any bangs because half an inch is missing at the front. I also don't have any eyebrows. All the hair is missing at the back too, so I once again have a fierce 'under-cut' ... and this time I'm okay with it.


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Most little girls have a very special connection to their hair. When I was growing up in Australia, I was always trying to make it the best hair it could be, and sometimes I got it a little wrong. The...
Most little girls have a very special connection to their hair. When I was growing up in Australia, I was always trying to make it the best hair it could be, and sometimes I got it a little wrong. The...
 
 
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12:34 PM on 11/15/2011
Your answer may be found by reading a book entitled "Dangerous Grains", by 2 Australian doctors who cured about 100 people of lupus (another autoimmune disease) in the 1990's. When they presented in the US, no one believed them.
A list in the back of the book covers about (50) possible sensitivity symptoms, if you resonate with any one of them, then switch over to the Dr Hyman's website, and read about food sensitivities in detail.
For every disease, an answer exists; but standard US medicine has been reduced over the years to pushing drugs instead of finding the root causes.
Funding and profitability has a lot to do with this.
You will need to stay outside that system, for example, find doctors listed under integrative or naturopaths, and get to them using recommendations. Not unlike finding a needle in a haystack, but there are a few excellent ones out there.
Good luck!
08:59 PM on 10/31/2011
Alopecia Areata is a terribly frustrating disease. It is an Auto-immune disease, which means they don't know exactly what causes it. The good news is that for many it resolves itself with-in 6 months and in some cases responds to steroid injections. When there is no response by 6 months, the bald areas it creates is usually permanent. There is a new therapy which is very new and has is not an approved treatment for alopcia areata but has shown some promising results. Dr. Gary Hitzig a New York hair transplant surgeon has been working with ACell/PRP with Hydr-ACell on a limited number of patients who are past 6 months and have not responded to traditional treatment. On this supposedly “lost cases” he has tried to stimulate hair re-growth by Adult Stem Cell conversion. http://nyhairloss.com/news/acell-and-enhanced-prp-injection-results-treating-alopecia-areata/.
10:34 AM on 10/31/2011
Sounds like my daughter who has AA. She is eleven and wanted me to shave her "fuzz" off. I said "why don't we see what God has in store". She tells me "Mom there is nothing special about having hair! I am so glad that I never did any treatments to help it grow. Instead we worked on treating her inside.
12:26 AM on 10/31/2011
How ironic that she was known as the girl with the beautiful hair and then this happens. In highschool I was voted "best body" ( I am 51 now ) and I was always in bikinis, cut off shorts, and tube tops (remember them). Right after graduation, I developed the most severe case of exzema and psoriasis all over my body (it was summer in Southern Ca.) and I hid myself with pants and long sleeve shirts. It would be 100 degrees out and I was so ashamed to show my skin that I would rather sweat and suffer than let anyone see my skin. Needless to say it was a very humbling experience for someone that was so proud of her body and thought nothing of flaunting it. I applaud this girl for coming out and turning it into something positive that can help others when it could be so easy to hide all the time under a wig. She has learned that true self worth does not come from her hair as I learned that mine didn't come from a "good body".
12:10 AM on 10/31/2011
I sympathize with you for your hair loss and see that you have found a positive way to live with it. I too had Alopecia Areata and lost all of my hair. I saw several doctors but was just told that if it came back that I wouldn't lose it again. I had little confidence that I would ever see it again and started wearing those horrible wigs. Two years later though and it started coming back in! Darker, much more grey, but it was my hair! It took almost nine months for a full head of hair to come in, and I celebrate! I didn't ever have the confidence to go out in public without a wig, and then was self-conscious about how bad the wig looked. It's a joy to hear you say you have found a way to look at the hair loss as a blessing. You are beautiful with or without hair!
11:21 PM on 10/30/2011
Brave girl. Bravo!!!
10:39 PM on 10/30/2011
A beautiful lady....inside and out
10:31 PM on 10/30/2011
Georgia, I really know how you feel because i also suffer hair loss. sometimes i even hate to stand in front of the mirror, i have no confidence in myself, but you are not alone, many people like you also suffer Alopecia Areata, all you have to do is cheer up and make yourself happy, you are really a beautiful girl with or without hair! Be confident!
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10:26 PM on 10/30/2011
My mother lost all of her hair from Rhumatic Fever. She wore a wig, and false eye lashes, and false eye brows. Later she also had to have all of her teeth pulled. I just wish she had had someone like you to talk to, and make her feel better about herself. She finally did accept it, but she was never comfortable with herself. One time someone was starring so she took off her wig, and eye lashes, and eyebrows. Then she went to take out her teeth, and the person starring took off! We all had a good laugh at someone else!
10:25 PM on 10/30/2011
A beautiful story from a beautiful lady....
10:22 PM on 10/30/2011
I, also was diagnosed with an autoimmune disease that was "incurable." I finally found a clinic in Atlanta that helped me overcome allergies to almost all foods and chemicals. Dr. Bergeron has a website but IDK what it is. He is an integrative doctor and his staff is excellent. 678-990-5401. They treat lupus, lyme, chrone's, etc as well as regular complaints. I would not be here today if not for them.
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10:16 PM on 10/30/2011
reminds me of a young sinead oconner from about 20 years ago,looked better bald than with hair,,,just ride it for whats its worth,youre not the only one with this problem,,bald heads are kinda hot,if you got the face to wear with it and honey you do and one last thing,just think of all the cash you will save over the years on hair products and trips to the salon,,,you just may be able to retire early
10:03 PM on 10/30/2011
You look a lot like Natalie Portman in V. She was outwardly beautiful in that movie, and you are equally outwardly beautiful. I don't know Ms. Portman, but you are a beautiful person on the inside as well.
09:45 PM on 10/30/2011
She has the most beautiful shaped head!!!! What a knockout...I love the way she looks with or without hair.....actually, I think she is prettier bald cuz her gorgeous features show more....mk
Iplayeasy
Micro-bio...that's yogurt right?
09:44 PM on 10/30/2011
Once when my daugher was in her twenties, her friend lost her hair from chemo, so my daugher and all of their friends shaved their heads so that her friend wouldnt stand out by herself. She instigated the act and I was very proud of her.