Alopecia World
Where acceptance is all there is!
Because of the Lack of studies for Frontal Fibrosing Alopecia I made a Chart here
My Doctor says it's almost guaranteed that there will be no studies for the disease FFA because there's NO money in it. If there are studies that INCLUDE FFA it's because FFA has to do with hair loss which is an issue that brings in a great deal of money.
SO! I thought, why not start our own thing. I started a spread sheet with some statistics and factors and only if my fellow Frontal Fibrosing sufferers are interested (it's totally anonymous) I could share it here (the ONLY forum I know of for this disease).
If we get 100 people or more, I will bring it to a reputable Hospital here in NY and see if we can muss some real interest to conduct an official study to help us.
It's completely anonymous.
I started it so it's easy to follow the format.
I might have to turn it from an excel doc to a google doc though.
https://docs.google.com/spreadsheets/d/1aeFfbgrTwmr0v-kWpWX0gSJk06U...
Replies to This Discussion
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Permalink Reply by Lo on
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BBQueen - may I ask how much you have lost and how long you have had this? Are you still able to "get away" with styling your own hair? All the best to you...
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Permalink Reply by BBQueen on
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Lo- I have lost about 1-1/2 to 2 inches all around my face in about 4 years. The damn thing wont stop. I also think that stress and worry played a big part. I have bangs that barely cover it but it looks stupid becuz they are so thin now. It makes me so sick and mad!!! How much have you lost? How are you coping with it?
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Drahon&fox, what new medicine are you starting? The top of my hair is thinning also. I never thought this could happen. I feel like one in a 100 million and not in a good way. The thought of wearing a hair piece or a wig for the rest of my life makes me sick, but im tired of dealing with this. I feel like cutting my long hair and getting on with life. I dont even want my husband to look at me. I really hope finestride will help soon. Its only my 3rd day on it....
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Permalink Reply by sallylwess on
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Dear Ones, as I read about your experiences with this condition we all share, I feel so many emotions. I also literally feel your emotional and physical pain. I join you in understanding the frustration of not being able to do anything about this disease that continues to rob us of more than our hair. I too am sick and mad and just plain tired of thinking about it. I have lost a circle of about two inches across on the crown of my head as well as several inches all around the front hairline. I realize I first started seeing the effects of FFA in 2006, so I have had it for going on for ten years. Nothing has worked for me, but I am hopefully going on finasteride. It was offered to me nearly two years ago, but I didn't take it. Now, I am willing to try it if it will stop this loss. I too wish I could say something to encourage you. I also feel like one in a million and not in a good way. I wear my hair piece everyday now. Thankfully, my husband does not seem bothered by my "new look." He is very supportive. Also, I just want you all to know that I am most grateful for you. I feel less alone because of you. I hope for a cure. I pray that those younger than I do not have to suffer from this because of the studies being done. Thank you for sharing your stories. You help me live with my own story. Blessings in 2016.
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