Help find the cure

Have you registered on the Alopecia Registry? http://www.mdanderson.org/departments/alopecia/
It will help MD Anderson with research on the exact causes for Alopecia. It is also possible that you will be asked to go to level 2 and actually partcipate in a research study. I was surprised when I was asked to participate in the research. I am now in that process and would appreciate your good thoughts and prayers for it to go smoothly. I must fill out paperwork, visit a dermatologist and get blood drawn and all this will be sent back to MD Anderson in Texas. Trying to get this process completed under the pressure of my classwork has me pretty stressed. But I felt like it was my chance to fight back against a condition in which we otherwise have little to no say in. It's something I MUST do no matter the extra work and energy it adds to my crazy busy life. Maybe I can say I had a part in the cure; in stopping others from having to brave what I have for 32 years.

I hope some of you will feel the same way.

Views: 2

Comment by Kelly on May 16, 2008 at 3:00pm
Hi Bald Girls Do Lunch. Yes, you are correct. They are not directly looking for the cure. However, the info we provide could eventually lead to that process and that is why I say that we could help find the cure by getting our stories out there. No participation, no progress. I am glad that you have posted this information on my blog because in my hopefulness, I jumped ahead. We have been ignored for so long within the medical community that I am feeling optimistic that SOMEONE cares enough to begin gathering data. Along with what you clarified, I spoke with my rep today from MD Anderson and she stated that the info will hopefully be convincing enough to be used to lobby insurance companies to begin to cover the cost of wigs. If we could be acknowledged by insurance as having a medically necessary illness, that alone would be a miracle breakthrough for our cause.

I'm so glad to hear that you too have contributed. Who knows what difference we can make even with what seems such a small start.

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