Wednesday, September 19, 2012

Alopecia Areata: Why I Lost My Hair

Some of you may have noticed (or maybe not, who knows) but I am
bald. At the ripe age of 25 I have lost approximately 70% of the
hair on my head. Not just my head though. My entire body is rejecting hair. My eyebrows, my legs, ooooother parts. You know......

The reason for this excess shedding? My body hates hair. Literally. It
thinks it's the enemy.

**For comparision purposes here is me about two years ago.


LOTS of curly, thick hair.


This picture was taken less than a year ago....My hair lost it's curl but was still very thick......

When I was training for my marathon last year I noticed a red/pinkish
ring on the front of my hair line. A couple of weeks later, all the
hair covering that discolored portion feel out. I went to the doctor,
was told it was probably ring worm and given some antibacterial cream
to put on it. Anybody who knows me knows I HATE germs. I don't share
chapstick, drinks, eat after people, use water fountains, etc. I was
devastated.

I diligently applied the cream and waited for the big salmon spot to
disappear. It did but I noticed that the hair continued to fall out and
it picked up some serious speed. I lost my hair by the handfuls in the
shower. This is NO exaggeration and I cannot explain the feelings that go along with something like that. To say it was traumatizing does not
even begin to explain how I felt. I went to a dermatologist and she
was very matter-of-fact with me. "That's Alopecia Areata. I can tell.
I'll give you a shot". She handed me an explanatory paper and stuck me
in the scalp with a big ass needle about 10 times. I looked like a
damn pin cushion. Since then my hair has continued to shed. Coming
back in sometimes, very fine, thin and white. Then it falls back out.

Do you want to know the real pisser about all of this? There is NO
reason for it. Apparently, this is one of those rare diseases that
doctor's know nothing about. It seems as though not much research can
be done because it's not properly funded. It's symptoms are considered
"purely cosmetic" and it receives no precedent. Hell, my insurance
won't even cover a dime of the appointment or treatment costs.

I have had my blood taken to test every hormone/vitamin level,
allergy testing done, cut back on working out (I broke my foot so I
was forced to), cut back on drinking, got more sleep. The hair just
kept on falling out....

Here is what my hair looks like today:



**Excuse the lame iPhone pictures and messy room. I haven't taken a picture sans hat since last March so I had to take some to write this**

For a better explanation to this disease (and not just somebody who has it and wants to bitch about it...) you can read about it at:
http://www.naaf.org/site/PageServer?pagename=homepage

At this point I have lost much hope that I will ever have a full head
of hair again. It has taught me a few things though.

I AM THANKFUL.

I am thankful that I have such an amazing support system. I have a boyfriend who tells me how beautiful I am every single day. I have a family who, while we joke with each other, would do anything for me. I have an amazing daughter who needs me to be strong and basically show her that shit happens and we just have to keep on chugging, roll with the punches and do the best we can with what we are given.

I am thankful that despite the fact that every body who passes me on the streets thinks I'm sick, I am a very physically strong person. I've lost my hair, not my strength. I continue to run and workout and push myself as hard as I can, because I can. I will not allow this disease to define me.

I will no longer judge people by the way the look. I will not assume that they are old, sick, unhealthy or incapable because they look so. I've learned that their are other factors that play into such things and some things are honestly out of our control.

Don't think that I am "ok" with this situation. It sucks and I would give up almost anything just to look feminine again. I have to accept it though and the least I can do is bring awareness to a disease that many people may be unfamiliar with.

12 comments:

  1. Good thing I didn't only like you for your hair...

    But seriously, thank you for putting herself out there. I know it is hard to share your private self with the world. But is it liberating once you do it.

    And just remember nothing can take your real beauty away...

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  2. I love you sister. Keep being an inspiration to that strong, beautiful daughter of yours and all those who come across you.

    Also, I meant to tell you at dinner the other night that when you took off your hat you looked absolutely gorgeous. I think I had consumed too much pistachio cake and was legitimately in a food coma or else I would have told you then. Shame on me.

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    Replies
    1. Love you too, Sister.

      You barely touched the cake! It was a "sweet potato chip coma".:-)

      Delete
  3. Thanks for putting yourself out there - it must have been tough to write this. I hope that someday they find something to help you. You are a strong and beautiful woman and nothing can take that away from you.

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  4. Just wanted to say I'm SO PROUD of you for writing this post. I can only imagine what it must feel like to lose your hair and you're an amazing person, runner, and athlete -- hair doesn't change any of that.

    I still think you should rock some Katy Perry-esque wigs though! =p

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    Replies
    1. Thanks Courtney!

      And I've agreed to wear one on Halloween (for our little party in my office) and we'll see how I feel! :-)

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  5. hey! i found you though amanda-runtothefinish (saw a comment you left there mentioning AA). i have AA myself and also recently "came out" on my blog earlier this year (hard to do). mine came about my sophmore year in college (i'm now 28) but i'm still not used to it. i have only met 1 person with AA so when i saw you mention it i just had to come over and check your blog out and add you to my reader. have you gone to any of the naaf conferences? i thought about this year's but the $ kept me from registering. anyway i hope this isn't a weird or creepy message, i was just excited to find a kindred spirit coping with the same issue.

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    Replies
    1. Hey! Good for you for "coming out" about it. I was only diagnosed with it about 6 months ago. It's such a crazy thing.....I did go to the NAAF Conference this past summer (are you in the DC area?) and I have to say that I was not terribly happy with it, especially for the price. It actually kind of made me even more upset about the whole thing. I feel like all they said, over and over, was "we don't know anything". It made me feel more hopeless. I have a friend who has a 2 year old with AA. He really enjoyed the parts dedicated to parents learning how to help their young children deal with this growing up.

      I don't think this was a creepy message at all! I'm glad that you messaged me and I look forward to reading your blog.

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  6. I just wanted to say thank you for posting this. I have been diagnosed with AA, and in the same matter-of-fact way you described. I think my doctor just added "it won't hurt, and you're not going to die from it or anything." It's difficult sometimes to find that place in yourself where you accept the sadness and dissapointment that comes with AA and the happiness and gratitude in knowing that there are so many things that are worse in the world. It's only hair, but then again it's ONLY HAIR, the first thing you see. You are beautiful as you are and sharing your story helps others like me. Thanks again.

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  7. Alopecia might make you feel awkward, but at least we know that it doesn’t damage your general wellness. Just maintain cheerful and positive attitude towards everything. And always remember that your hair might leave you, but not those people who love you and support you in any situation you are in. Cheers!

    Evelyn Barrett @ Good Look Inc.

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