Comment

Comment by PamW San Diego, CA, USA on May 2, 2013 at 10:37pm

Judy, thank you for the compliment. I think you are pretty remarkable. You have such a generous and warm spirit to reach out to a perfect stranger.

Karen, I am so happy that you went to another doctor. I think we are so lucky when we can find anyone who knows about this horrible and rare disease. Keep on asking questions. Who knows? Maybe one day someone will actually have an answer.

Comment by Judy on May 2, 2013 at 9:59pm

Hi from Judy in San Diego. Today Pam and I met - I must tell that Pam is really a beautiful woman, both inside and out. It was
such a pleasure to meet and so interesting to compare notes. We just could not figure out why she has the itching and inflamation which I do not have currently. Possibly it is just I am in remission for awhile. Incidently, her eyebrows are fabulous - too bad we can't all go to her tatoo lady. There was no doubt that we both have FFA. Lacy, we would love to meet up with you so next time why don't you arrange a time?

Comment by Simone NJ USA on May 1, 2013 at 5:08pm

Good luck tomorrow, Celia and thanks for taking the questions to Dr. Harries...

Comment by Celia on May 1, 2013 at 5:05pm

Debs - you are right I think - how can something like this affect only certain ethnic groups ? We are all made of skin and bone and - OK - if they believe this to be true (which I think is nonsensical) why then do they not do research to prove/disprove that theory ? I will ask tomorrow what we as a tiny group of ladies might do to advance the research. That questionnaire some of us completed.......I wonder what will be made of it ? I am most interested in what meds have been shown to work and on the profiles of people who have been treated successfully with meds. As far as I am aware - the treatments are hit or miss and it's difficult to determine whether any noticeable improvement is due to meds or whether any such improvements would have happened anyway due to lifestyle changes etc. Oh well off for an early night - early start tomorrow. x

Comment by Debs on May 1, 2013 at 3:03pm

CELIA, I wish you the very best of luck tomorrow with Dr Harries. As I only saw him a few weeks ago I don't have any questions for him. I hope you have a positive experience. XXX

KAREN, these derms do seem to have some odd ideas about FFA only affecting specific ethnic groups, Dr Harries thought that women of african origin did not get FFA... I told him that besides myself I know of 3 black women with it.... and now your derm thinks the opposite... I think that really is indicative of how little the medical profession seems to know about FFA and how little empirical research has been conducted until now. I am glad that you feel happier with this new derm and I hope you are able to find an effective treatment plan with them.

Comment by KarenGinny - Iowa, US on May 1, 2013 at 11:07am

Hello all, I wanted to share that I went to get a second opinion of my hair loss yesterday to a different dermatologist than my previous one. He was a bit more optimistic which made me feel better. When I was diagnosed in March 2012, my other derm did a biopsy on one section of hair and said it was FFA, and offered no other treatment and I was too much in shock to think of any questions to ask. So after a year of agonizing over it and losing more hair, I saw a new doctor now. He looked at my hair more thoroughly and said he's not entirely convinced I have FFA and may be Alopecia Areata instead, or a combination of both. He said FFA primarily only occured in women of African-American descent which I am not, but I'm not sure I agree with that since I've come to know all of you here. But he is going to look over all my previous dermatology records and then probably do another biopsy. One reason I hadn't gone back to the derm is my health insurance says they don't cover treatment for alopecia and my other appointments in the past got very expensive. But I decided I needed to go back for some answers, whether it's covered or not. A few things he did recommend for hair loss was Rogaine 5% and Biotin 5000 mcg a day. He will get back to me in a few weeks and let me know what to do next, and I feel better about him as a doctor than I did the previous one. I know the parts above my ears and forehead that are very bald probably won't grow back, but if I can save more hair on the sides and back at least it will look better in general. I'm interested in the Buffs that were mentioned, I just wonder how hot it would be, but at least I could wear one as a headband over my bald spots and when the wind blows I won't look so weird. I'm not really a hat person, although I have become one. Celia, good luck at your appointment!

Comment by Celia on May 1, 2013 at 9:29am

Paula - I rather stupidly because of security risk, deleted my inbox - you need to invite me as a friend and then I can give you directions via this internal e mail. Look forward to seeing you.

Comment by Paula uk on May 1, 2013 at 8:24am

Hi Celia,
Good luck tomorrow.
I'm unsure of how to contact you off forum site for directions.
Whenever you get a moment could you advise me.
Thanks x

Comment by Celia on May 1, 2013 at 8:18am

Hello all - I see Dr Harries in the morning and will ask him the q about DNA testing and what would they be looking to identify. I am going with rather a lack of optimism, I'm afraid, but that's partly my mindset at the moment - I will be very upbeat when I see you all though - I promise ! We are collecting Martyn's 92 year old aunt (she has a fine head of hair !!!) from near Manchester after my appt. and having her to stay for a week - feed her up, cheer her up and take her back happy - she is very lonely. Debs - I think I said a few days ago - truly every time I go to the DIY store B & Q I see at least one person with significant hairloss - even 2 cashiers and I end up nudging Martyn. Perhaps this thing has always been around and you don't notice it until it affects you personally.
Liz , I have worked with youngsters with Aspergers Syndrome in mainstream school and I am sure this must be very hard to deal with at home, cannot help your stress levels at times. I hope your school is helpful. See you soon - any other questions - I will check this website in the morning before I set off. Have a good day - sunshine ! x

Comment by Jules UK on May 1, 2013 at 8:08am

I do agree, Debs. I've just starting wearing hair bands to my yoga class and will just have to get used to wearing them all the time now the weather's too warm for hats. X

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