Comment

Comment by Liz on February 8, 2013 at 11:30am

Hi Pam. I've mentioned my mum before. She has FFA and has lost a band of hair, about 2 inches wide, plus her temples and eyebrow hair. She says that she feels she's had it for about 6 years but doesnt think it's progressed for thr past 2 and a half. Mum had never heard of FFA before I was diagnosed last September. She had originally thought that she'd caused it by wearing a visor when she played bowls. She said she had always wondered though why it never tanned. Anyway, she has a fringe so unless the wind blows you'd never know she has it and s I say, she thinks its not got worse for several years, she's never taken any tablets for it. She does however miss her eyebrows and this causes her far more upset than the hairloss.
x

Comment by PamW San Diego, CA, USA on February 7, 2013 at 11:27pm

I think it was Judy who said that when she went to her dermatologist she was surprised because she only saw women with diabetes with this condition. I always thought that this had something to do with the way that I metabolize carbs and sugars. I had been on a very strict diet right before I was diagnosed. I was really restricting my sugar and carb intake and I think when my body started getting them again, things went haywire. I think our hormones (or as my daughter likes to call them - horrormones) are whacky from menopause and this changes the way we metabolize. I know Celia said it happened after she was really sick and I am assuming she wasn't eating much . . .
Has anyone heard of anyone with this disease who has actually gone into remission?

Comment by Robyn, Melb. Australia on February 7, 2013 at 5:30pm

Ellen thanks for the link to the article about sugar. It was an article I read a few months ago about how sugar is poison, that started me thinking about how much sugar I really ate, and how much more sugar I am eating than I once did. My doctor did say that menopausal women do eat more sugar due to changes in their body, so I put it down to that. After hearing all the other comments I must say I have to consider that sugar might be part of contributing factors to my FFA - can't wait to get my copy of I Quit Sugar, to start work on getting as much sugar as I can out of my life as I can.
Couldn't help but agree with others about wine though - don't want to give up my glass of wine at night - that might have to be my treat of 'sugar' each day rather than a cake, biscuit or piece of chocolate! Listening to all the stressors in everyone's lives over the years I'm convinced these episodes are related to why we have contracted FFA. Robyn

Comment by Liz on February 7, 2013 at 3:13pm

Are we entitled to a nhs wig?

Comment by Liz on February 7, 2013 at 3:09pm

I eat a lot of sugary foods. I cant seem to get through the day without them. I also take a lot of antihistemines and have done for years.
x

Comment by Heidi Short UK on February 7, 2013 at 12:53pm

Rebecca I too lost my dad 5 years ago, he had mesotheleoma (aspestoses)it was horrific what he went through. He was fit with no health problems in the June and by xmas he had passed away. I was completly stressed out. I did alot of the caring for him as my mum had passed away 7 years previous I was completley helpless to it, especially the last few weeks. He was in agony the pain releif wasn't working and the doctors wouldn't sedate him so, I can feel myself getting angry writing about, I have never been so stessed in all of my life!
Iam also a cook and I have a sweet tooth, although I do cook healthy meals if there is cake or better still chocolate about I'm the first in the que!

Comment by Heidi Short UK on February 7, 2013 at 12:40pm

I'm really sorry Celia and Pam I looked at the website before I left for work in the morning and there was no reply about any questions so I didn't ask your specific ones. However, my own list I asked about extra vitamins and she said a multivitamin with minerals every day, she did say my hair looked in good condition and therefore she didin't think I was lacking in anything! I asked about diet and she had nothing conclusive to say. My measurements had not increased since last time and she said I didn't need to use dermovate on the sides of my hair line now as the inflamation was not visable there but to continue with the middle section.I asked about the rash under the skin on my forehead and she said she had another FFA sufferer who had a significant rash all over her face so it might be connected.She also said that it isn't a true auto amune disease as it works differently to others, she went on to explain but lost me completely!!! I was telling her about my other problem of very itchy salivary glands when I eat certain foods and that the the antihistamine tablets don't seem to work, she told me I should take 3 or 4 a day for a month to see if this stops it, once I have a month free from it start to reduce it!!! All these things do add up to be what we put into our bodies.
When I was first diagnosed and I was in complete panic I was trying everything. I went to a very good health shop in Exeter where they had a number of different holistic and alternative practitioners, but at the time I was on a certain acid /alkaline diet, I was having reflexology and rhaki and I was using philip kingsley products, so I didn't think I should try anything else. But now I might pop back to see what is available!
I did say to her about this website and if any questionaire etc or data is required she would have 30+ ladies wanting to help!

Comment by Susanne on February 7, 2013 at 11:06am

Hi Alice - you're in Durham! Wow. I'm new to this and am not sure how the friend request thing works here, but I'll sort it out. Who's your dermatologist?

Comment by Alice on February 7, 2013 at 10:59am

Susanne,

I have been lurking in this discussion for a while and just joined today. I am also in Durham w/ FFA and sent you a friend request. I hope to chat w/ you soon.

Alice

Comment by ElleMN, USA on February 7, 2013 at 10:24am

Robyn I completely agree. The New York Times published a great article called "Is Sugar Toxic."

http://www.nytimes.com/2011/04/17/magazine/mag-17Sugar-t.html?pagew...

Here's a link if you want to read it. I'm going to reread it now!

Are any of you taking Zyrtec or other allergy meds? Just curious. I have been for years and it occurred to me that maybe it's messing with my immune system ever so slightly.

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