Tuesday, June 15, 2010

Just A Minor Complaint

... this isn't really a 'complaint' exactly, but it's pretty close ;)

Have you heard of the charity group called Locks of Love? What is the first thing you think about when you hear that name?

Cancer, right? Donating hair for making wigs for kids undergoing cancer treatment, right?

I hear it all the time. Kids growing their hair and then having it shaved off to raise money for the cancer society and donate to locks of love. If you ask almost anyone, child or adult, who has participated in a fundraiser like this, they will tell you that they had their hair cut off to help people with cancer.

So what would you think if I told you that the majority of children who get this hair suffer from something called Alopecia? I'm NOT saying that locks of love is not a good organization to donate to, because it is. It's wonderful from what I have seen and heard. And as it happens, I am an Alopecia sufferer myself so I am well aware of this.

But what the heck is Alopecia? Have you heard of it? It can come in different forms - mine is mild. Others are severe. HAIR LOSS. Some suffer from a complete total loss of hair over their entire bodies. Some lose all of the hair on their scalp. And some have what I have, balding patches that come and go over time, possibly becoming worse and permanent, or sometimes not. You just never know.

At any rate, when people send hair to Locks of Love, the highest chance is that a child with Alopecia will get it. Not cancer. It is a wondeful thing to do, and people should continue to support this group if they wish. But I really do hope that more awareness for Alopecia will be advertised. A child going through chemo may lose their hair, and it usually grows back. A child with severe alopecia will be bald for the rest of their life. This is a major self esteem issue, something that they cannot change without the help of donators of real or synthetic hair. It's a fabulous program. But sometimes I wonder how those kids feel when they get a wig, and then find out one day that almost everyone who donated to the program thought their hair was going to cancer victims and probably would not have bothered if they had known it was for alopecia. That's pretty sad!

This segment appears in the very first paragraph on the Locks Of Love website:

"Most of the children helped by Locks of Love have lost their hair due to a medical condition called alopecia areata, which has no known cause or cure. The prostheses we provide help to restore their self-esteem and their confidence, enabling them to face the world and their peers."

So it's not hidden, people just don't even bother to look up what they are raising money for. I am glad for their support. I have met a few people with the total form of alopecia. They have never had eyebrows, scalp hair, arm hair, etc and never will. Their lives are changed greatly by the simple act of some generous person out there cutting their locks and regrowing them. But I still find it pretty sad that people have no clue what they are donating to. Most people I talk to about it have never heard of alopecia and they look at me like they don't even believe what I am saying. So if I feel like it, I pull aside my long hair to show what is hidden underneath. I've had treatments like cortisone shots directly into my scalp, topical steroid creams, etc but it was all short lived so now I just deal with it. I don't have total loss, the most I've lost was a third of my hair in 1997 when my first child was 3 months old. Now it's just loonie and toonie sized patches that eventually grow back. No big deal.

Cancer is a terrible ordeal and people should continue to help where and when they can. But when they cut their hair, and then walk around telling people they 'cut it to give to someone with cancer', chances are, they did not. Money raised during these events certainly goes to whatever cancer charity is named, but the hair itself will most likely end up helping a child with Alopecia instead.

I decided to write about this again because it goes along with my previous post concerning the Haiti donations. We are handing our money out left and right and many people have absolutely no clue where it is going.

1 comment:

  1. one of my grandkids has alopecia. she is 12 and it is very hard for her to cope with it it.



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