Monday, July 14, 2008

Something different again...

Whenever anyone thinks of the Locks of Love program, it seems an assumption that it is for cancer patients. It is, but it is actually mostly for children who suffer from Alopecia which is an auto-immune disorder that causes people to lose their hair. I suffer from this as well. It was triggered in the fall of 1997 when my first child was only a few months old. I lost all the hair on the left side of my head and it took months to grow back. I could only just barely cover the completely bald side with hair that was still growing out from the top of my head. I had no idea such a condition existed until it happened to me. But I consider myself lucky because so far, I only have the patchy bald spots. Some people lose all of the hair on their scalp and it NEVER grows back. Some people have the most extreme form where they lose the hair on their ENTIRE body and again, it never grows back. I was diagnosed at the Churchill Hospital in Oxford, England.

The form I have may eventually become Totalis where I permanently lose my scalp hair, but hopefully it will not advance to that. I am posting about this here because I think people should be made more aware of disorders that affect millions of people. I have actually met some women with Alopecia Totalis but I did not realize they had it because they wore wigs. But there are literally millions of children in the United States alone who have this, and Locks of Love is their primary source of aid for creating hair pieces. Imagine being a child, growing up with people constantly staring and teasing and bullying - just because you don't have hair! It is very unfair and ridiculous because it is 'just hair'. But it gets considered a disfigurement and leads to depression among children and adults alike.

Currently, my youngest son is 4 months old, and yet again my hair is falling out all over the place. I have to unclog the bathtub drain every single day because of the amount I am losing. I have been in this house since February and had NEVER had to unclog the drain until now. It is very disconcerting to see my hair flying off of my head in the wind, to see it all over the house and all over my clothing, because I wonder if this is it - if THIS is when Totalis will finally hit me. I never know, and that is part of the problem. There is no cure, and about the only treatment that made a small difference was Cortisone shots into my scalp. It was not the most pleasant experience but I tried it and it helped for awhile, but then the hair fell out again in the same spot. So now I just wait it out and see what might happen next. Is it humorous to some people to hear about another woman going bald? Some may chuckle but you literally never know when it could happen to you. There is no family history of Alopeica as far back as we can trace, yet I know of 2 other women right here in my small city who have a more extreme form. I have met numerous women online from Alberta alone... so how many more could be out there? I am posting this to raise awareness and also compassion for men, women, and children who suffer from this. But it seems more socially acceptable for a man to have thinning hair than it is for a woman or a child, so this goes out to them.....

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