Comment

Comment by Simone NJ USA on March 31, 2013 at 11:14am

Hi Everyone:

Thanks for the explanation Pam...I am so grateful as well to be a part of this forum..it has made me feel I'm not a freak and alone. I have actually learned to accept it better as I'm doing whatever I can and all I can do now is hope for the best that it will stop one day and there will be a cure one day as well..thank you all on this forum for the helpful information, support and inspiration....Happy Easter...xxx

Comment by Debs on March 31, 2013 at 11:02am

Heidi, that must have been very upsetting for you. It is amazing though what poor social skills some people have, often at work I can ask a passenger if they had a nice holiday or some such small talk and they will give a very similar short answer and seem quite embarrassed to have been spoken to about what I guess they perceive is a private matter. So I think the lady at your gym would have been equally ill at ease if you passed a comment about the weather.

Comment by Heidi Short UK on March 31, 2013 at 6:33am

Happy Easter everyone! Pam I can see why you are a teacher, you explain things so easily, I'm the complete opposite, I make the most simple things sound complicated!! I'm finding it so hard to keep up with the conversations, I don't look on the forum for a few days and then have to read 4 pages of update myself! I can't beleive there are 52 members now, WOW! I think when I joined there was a handful of us.
Thanks for the phone number Debs I will ring them on Tuesday to ask for the survey. I'm a bit like you Debs regarding your attitude towards FFA, when I was diagnosed I was really down I can't tell you how low I felt, I cried all the time and felt ugly and so helpless. But now that I know its not falling out in handfuls and I'm not going to wake up in the morning with my hair left on my pillow, then to have found this forumn, this has become my therapy. I have someone to talk to no matter what time of day it is and having such a large group from all over the world gives me confidence that I am doing everything possible and I have the most up to date advise, more so than my own GP. I have become much calmer about my condition and it doesn't take over my life, its always there, but its not what I wake up to.
Jodie I used to smoke, but I gave up 6 years ago when I started going through early menopause at 43 years old! So wouldn't I have FFA if I was still smoking, I hope this is not correct as I would start again tomorrow!!!
CJ regarding approaching strangers, I go to a gym class and there was a lady there who obviously has alopicia and doesn't really hide it, but it was when I was feeling down last year, so I thought I would approach her to see if there were any support groups in the area. So after a couple of weeks of smiling at her, or saying hello if the chance came up I plucked up the courage to say something. I waited until we were outside and on our own and just said to her 'hello my name is Heidi and I was wandering do you have alopicia as I have just been diagnosed with FFA which means I will loose the front part of my hair, and I'm struggling to cope and I was wandering if there was any support groups in this area that I could go to? Wether she was embarassed that I had bought it up or just found it differcult to talk to me she just said ' no there isn't!' and walked off!!! I felt worse and rejected from a someone who was also sufferering and went home and cried in the shower! So beware that you might be not be welcomed with open arms!!!

Comment by Debs on March 31, 2013 at 3:42am

Pam, thanks for your usual fantastic explanation.

Comment by PamW San Diego, CA, USA on March 31, 2013 at 12:08am

The toxic lipids build up in our sebaceous glands which sre located deep within our hair follicle. The hair follicle eventually scars over as a way to protect itself from the attack and the hair can no longer grow. No one knows what causes the lipid to become toxic. It was thought to have a hormonal trigger (such as menopause). The latest research is showing that there may be a metabolic trigger, which is why Actos, the diabetic drug, was tried. Actos changes the way our bodies metabolize and affects our lipid function. Stress (physical like Celia's illness or emotional) can affect our hormone function, also. I am beginning to think that like other diseases, there is just not one thing that causes it, it can be genetic, environmental or metabolic. I think that is why there is no one treatment that works. Plaquenil is a disease altering drug, it is supposed to help our immune system with the inflammation. It doesn't get to what is causing the inflammation, which is why people still lose their hair while taking the drug. The only drug that has proven to stop the hair loss has been Actos, but it has a lot of side effects and has not been proven to work in all people. I can't wait to ask about the excimer laser.

Comment by Jules UK on March 30, 2013 at 3:48pm

Thanks PJ for your advice about steroid shots. I'm pleased they're working for you. I'm still confused about what course to follow. Celia, I wondered why you decided to come off all meds?
I've coloured my hair for about 25 years but recently switched to an ammonia free, low peroxide colour. dr Harriesvsaid it was OK to colour providing the dye didn't touch the scalp! Not quite sure how to manage that.... I wash my hair daily and have done as long as I can remember. I now use Daniel Galvin organic range (from Waitrose). But I don't have any of the itchiness that many of you suffer from. Both dermis I've seen have said frequency of washing had no bearing on the condition.
Happy Easter! X

Comment by Simone NJ USA on March 30, 2013 at 3:15pm

Thanks Alice !

Comment by Alice on March 30, 2013 at 2:21pm

Here is the link to an article about FFA that mentions the toxic lipid theory. I found it on the CARF website, under the Research tab.
http://www.carfintl.org/assets/docs/articles/Drugs%20in%20Dermatolo...
Just what I needed to hear - that I have a headful of poison fat! It doesn't indicate whether it can be improved by frequent washing.

Comment by Caro UK on March 30, 2013 at 1:52pm

I've been wondering how often to wash my hair as well. Any advice would be very welcome. Like Alice, my hair is quite dry, very fine and fly-away. I've been colouring it for years. I have been used to washing it twice a week with a shampoo for coloured hair and then a conditioner. At my last appointment my derm gave me no advice on how often to wash it or what products to use, but to be fair, I never asked him! I've been reading other people's posts and what their derms suggest and anti-fungal shampoos such as 'Head & Shoulders' which contains zinc pyrithione or 'Nizoral', which contains Ketoconazole are recommended. I have never had an itchy, flaky scalp or dandruff so I've never used either of these, but I've had some red spots on my scalp recently, and now I know what to look for, I can see that the follicles are showing signs of inflammation near the hairline. I've been using Dermovate which my derm prescribed, which clear up the spots very quickly but new ones reappear after two or three days. I bought some 'Head & Shoulders' today. Out of the blue about three years ago, having never had any skin problems before, I developed Rosacea on my cheeks and nose. My GP prescibed an anti-fungal gel called Metronidazole. I believe Rosacea and LPP are linked, if I am right in saying?

Comment by Simone NJ USA on March 30, 2013 at 11:18am

Hi Alice:

What exactly are toxic lipids and how do they affect FFA? Thanks..

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