Alopecia World
It's Hair Loss Support At Its Best™
My Story
I began losing small patches of hair at the base of my head in early 2009.
What maybe (maybe not) triggered the alopecia was a break up, retrenchment and a family member becoming ill with cancer – happening all at once of course.
In brackets I say ‘maybe not’ because irrespective of my circumstances, alopecia and auto immune disease run in my family.
This predisposition means alopecia could have happened at any time in my life. It was just its choice to manifest in my body now, no one (including me) is to blame.
I left the hair loss untreated for a couple of months, until July when a dermatologist finally reprieved me from their waiting list.
In an attempt to prevent further loss, the first dermatologist I saw wrote me a script for oral steroids. By the time I had consulted a second skin specialist, the patches began to grow in size. In the meantime, I was grateful the missing hair could be covered quite easily with the surrounding thick, healthy hair that showed no signs of disappearing anytime soon.
The new dermatologist continued my treatment with oral steroids and began me on a program of cortisone injections.
We finally found success in October when my hair began falling out less and growing back more. The new growth looked just like baby hair and was a sign of how temporary alopecia can be.
But it was in December, 2009 that my hair's texture began to feel different. In the midst of last minute Christmas and travel preparations, I failed to notice this change now relying on hindsight for this information.
Before I knew it I was on a plane to Singapore, on my way to India for my (new) boyfriend’s sister’s wedding.
The moment I stepped onto foreign land my hair began to fall at a much faster rate than ever before. Our hotel bathroom’s white tiled floor soon became covered in hundreds of strands of hair, all my own. 2 weeks in India brought much the same, if not worse.
I spent New Year's day in Gugaon, India feeling invaded by the alopecia, mourning my inability to stop the hair from falling out further. My cries were as desperate as my prayers for intervention.
Hours after I landed back in Melbourne I was in my dermatologist’s room receiving a new batch of injections. I’d returned with less than 1/4 of the hair I left with (probably 3/4 of my full original head of hair).
As part of more intensive treatment, my dermatologist sent me to a psychologist, who counsels me through my new life without hair.
It’s February, 2010 and I continue monthly treatments with my dermatologist and psychologist, coupled with a better way of living through yoga, meditation and spiritual studies.
These esoteric remedies help reduce general stress, which is a factor (though not a direct one) for alopecia. I am fostering new habits, ridding myself of previous self-neglect and learning to embrace the Universe's part in my alopecia instead of returning feelings of anger and resentment.
To promote the benefits of my various treatments, I rely on a wonderfully diverse support network.
These people include family who carry me on my bad days; friends who I speak directly and indirectly to about my alopecia; a boyfriend who comforts me like no one else can; and a collection of professional peers who remind me of my worth in the workplace headscarf or no headscarf.
The contents of my blog are written from my own personal angle. At no point do I try to represent professional advice nor do I try to pass on the granular details of my course of medication.
Finally, this blog is inspired by my most recent challenge: to save my eyebrows and eyelashes. Like the hair on various other parts of my body, it too faces being taken away from me.
What maybe (maybe not) triggered the alopecia was a break up, retrenchment and a family member becoming ill with cancer – happening all at once of course.
In brackets I say ‘maybe not’ because irrespective of my circumstances, alopecia and auto immune disease run in my family.
This predisposition means alopecia could have happened at any time in my life. It was just its choice to manifest in my body now, no one (including me) is to blame.
I left the hair loss untreated for a couple of months, until July when a dermatologist finally reprieved me from their waiting list.
In an attempt to prevent further loss, the first dermatologist I saw wrote me a script for oral steroids. By the time I had consulted a second skin specialist, the patches began to grow in size. In the meantime, I was grateful the missing hair could be covered quite easily with the surrounding thick, healthy hair that showed no signs of disappearing anytime soon.
The new dermatologist continued my treatment with oral steroids and began me on a program of cortisone injections.
We finally found success in October when my hair began falling out less and growing back more. The new growth looked just like baby hair and was a sign of how temporary alopecia can be.
But it was in December, 2009 that my hair's texture began to feel different. In the midst of last minute Christmas and travel preparations, I failed to notice this change now relying on hindsight for this information.
Before I knew it I was on a plane to Singapore, on my way to India for my (new) boyfriend’s sister’s wedding.
The moment I stepped onto foreign land my hair began to fall at a much faster rate than ever before. Our hotel bathroom’s white tiled floor soon became covered in hundreds of strands of hair, all my own. 2 weeks in India brought much the same, if not worse.
I spent New Year's day in Gugaon, India feeling invaded by the alopecia, mourning my inability to stop the hair from falling out further. My cries were as desperate as my prayers for intervention.
Hours after I landed back in Melbourne I was in my dermatologist’s room receiving a new batch of injections. I’d returned with less than 1/4 of the hair I left with (probably 3/4 of my full original head of hair).
As part of more intensive treatment, my dermatologist sent me to a psychologist, who counsels me through my new life without hair.
It’s February, 2010 and I continue monthly treatments with my dermatologist and psychologist, coupled with a better way of living through yoga, meditation and spiritual studies.
These esoteric remedies help reduce general stress, which is a factor (though not a direct one) for alopecia. I am fostering new habits, ridding myself of previous self-neglect and learning to embrace the Universe's part in my alopecia instead of returning feelings of anger and resentment.
To promote the benefits of my various treatments, I rely on a wonderfully diverse support network.
These people include family who carry me on my bad days; friends who I speak directly and indirectly to about my alopecia; a boyfriend who comforts me like no one else can; and a collection of professional peers who remind me of my worth in the workplace headscarf or no headscarf.
The contents of my blog are written from my own personal angle. At no point do I try to represent professional advice nor do I try to pass on the granular details of my course of medication.
Finally, this blog is inspired by my most recent challenge: to save my eyebrows and eyelashes. Like the hair on various other parts of my body, it too faces being taken away from me.
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Comment by Clara S. on March 10, 2010 at 6:07am -
hi Andrea, i've had AA on and off for 10 years and for the most part, it was just a spot or two that eventually would grow in. However, I started to lose hair dramatically a couple of years ago, did the steroid injections and it kind of grew back in up until last year. Then suddenly about 6 months ago, accelerated in the last 3?, i just started to lose hair at an alarming rate which means now i never leave my house without a hat or wig. Am trying to come to terms with this. I did stop steroid injections 6 mths ago and moved onto DCP treatment but am not convinced it's working. Anyways, just wanted to say that I totally understand what you're going through. Hang in there and there's tons of support here. :)
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Comment by Natalie on March 10, 2010 at 12:01pm -
Great story, Andrea. I too, learned to embrace what the world had in store for me instead of trying to fight back. Fighting what my body was doing was such a waste of energy, time, and an emotional drain. Now that I have accepted my alopecia I am the happiest I have ever been! Take care and keep on smiling :)
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Comment by Georgie on March 10, 2010 at 1:57pm -
Thank you for sharing your story with us. Yes, it is best to "embrace" our hair loss...as difficult as that may be on some days. I've been dealing with AA for nearly 3 years....sometimes laughing about it....and other times crying about it. My treatments have been kenalog injections and squaric acid. I shed a lot...and I vacuum a lot! I change my hair style around to cover the patches. It makes me happy to be a member of Alopecia World. It has been a wonderful resource and a place that always makes me feel better. We're all in this together. ;) I am impressed that your dermatologist suggested seeing a psychologist. This website has been my psychologist. I wanted to attend group support meetings with others in my area....but at the moment we do not have a leader. AW and support from my family has been just right for now. ;)
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Comment by Andrea Elda on March 10, 2010 at 5:08pm -
I hope I'm replying to these kind comments in the right spot!
@Clara
I'm seeing lots of similarities with our stories. It's amazing how it can happen all of a sudden, just going to show how unpredictable AA can be... What's DCP treatment? Your positivity is offering lots of great energy to this online community. Thanks for your support and look forward to building a nice friendship. PS. I was just in Singapore, it's lovely - so clean ! XX
@Natalie
Thanks for your words of encouragement !!! You're right, as soon as your mind shifts to the glass half full your body thanks you for it XX
@Georgie
Very true, every day with Alopecia is so different. Today I've woken up to see lots of lovely comments on my profile which feeds me confidence for the day ! It's good to extend out and receive love and support, this forum seems like the way to do it. What are kenalog and squaric acid injections? I know what you mean about the vaccuum !! I used to have a very thick head of hair, it went everywhere. That's one thing I don't miss now that my hair is shaved. Sounds like you can have fun with your hair still. I used to use two braids at the front of my hair then tie it back together to cover my patches (pic below). Thanks for your kind words and look forward to building a nice friendship :)
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Comment by Andrea on March 10, 2010 at 7:45pm -
Oh Andrea, I saw so much of myself in your story. Thank you for sharing with us. I used to not be able to look at my floor because it was always caked with my own hair. Thankfully, the shedding stopped after I lost about half my hair and now its gradually growing back. I'm so glad that you are able to take comfort in your friends and your supportive workplace. I'm laid off right now and going on job interviews with my wig is always a huge emotional hurdle. Take care and thanks for sharing.
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Comment by Andrea Elda on March 10, 2010 at 9:35pm
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@Andrea
That's great that your hair is regrowing!! Sometimes I'm convinced mine will never grow back. Dig deep and you will find your groove in interviews. The Universe only creates challenges it knows you can handle. Be proud XX
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Comment by Georgie on March 10, 2010 at 11:53pm
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Hi Andrea,
Kenalog injections are steroid injections. Squaric acid is the same as DCP, I think. When applied to the scalp it produces the same effect as an allergic reaction....like if you touched poison ivy or something. The irritation on the scalp is supposed to stimulate hair growth... Funny story: I discovered my first missing patch of hair after a day of working in the garden. I thought I had sunburned the part on my hair. Actually, the bald patch was sunburned....and that's how my AA began. My dermatologist told me that the sunburn on the patch was a good way to stimulate the hair growth!! She then gave me some kenalog injections. Oy.
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Comment by Clara S. on March 11, 2010 at 5:26am
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Yup, like Georgie says DCP is pretty much applied to create an allergic reaction. But the doc took me off it for a while and put me on steroids and minoxidil. Haha we will see how it goes. :) I'm looking forward to building a nice friendship with ya too and if you're ever back in Singapore, let me know! We can so meet up and everything. Would be so cool :)
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Comment by Andrea Elda on March 11, 2010 at 6:25am
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@Georgie Sunburn!! Now I've heard it all!! Good luck with your treatments XX
@Clara_Sim Thanks for adding to the convo Re treatments. I think I have a few new points of discussion with my dermatologist next week :) Shame we didn't cross paths before my big trip. Another time for sure and ditto if you're ever in Melbourne XX
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Comment by Leonora Antonello on March 12, 2010 at 4:03am -
I am so glad I have read your story. I am a 55 year old who has developed alopecia over the last 9 months. There is no history of anyone ever having alopecia in my family. To read about how well you young people cope has given me lots of hope. My bald patch keeps increasing in size and another patch has developed as well. I have had injections and am currently going through DCP. It is the unknown that worries me. I am a primary school teacher. I am at the stage of wearing a hat to school every day. I do have a couple of wigs but I prefer my hats. I have explained to the children at school why I am wearing a hat. They ask constantly how it is going and whether my hair is growing back. I have even showed them my bald patch after their persistent requests! I would love to get my hair shaved but my family are dead against it. But in the end, it is my choice. Once again thanks for sharing your story Andrea.
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