Comment

Comment by ellauk on September 11, 2012 at 8:11am

The book The Autoimmune Epidemic was first published in 2009 I think. I'm starting to think that a detox programme, including chelation.... proper detox is the only way forward for FFA. Anti inflammatories and stress management only treat the symptoms but not the cause. Sometimes I feel like shaving my hair all off. But I would have zero chance meeting a man then! ha ha

Comment by CJ- Christine from Ottawa Canada on September 10, 2012 at 9:41pm

Oh my gosh , its so hard to know what to do... Pam - derms who treat alopecia are rare... its a problem all over. although most say they treat it, very very few specialize in it. Its crazy making.
As for the conference - I think it will be amazing> i'm hoping that there will be people with FFA and LPP ( which I also have apparently). We will have one of the top alopecia docs in Canada there. He is doing work with the international alopecia research community.
Liver enzymes.. hmm. that suggests something else beside FFA is going on, doesn't it?
I don't know about diet.. although at the CARF conference the research derms there - most notably Vera Price, said that they now believe that FFA and the other cicatricial alopecias are NOT automimmune like AA, but likely reactions to environmental triggers. therefore , all of us, at some point in our lives, maybe recently were exposed to something that triggered some aberrant part of our DNA to start the attack on the sebaceous glands and stem cells around our hair follicles.
I'm on another on line forum on Facebook for LPP and a bunch of people are on the paleo diet and some ( but definitely not all ) report that they have hair regrowth and fewer symptoms - redness , burning , itch- while they eat that way.
I don't understand how there can be hair regrowth - either its dead or its not dead.
i think the anti-infalmmatory diet approach makes sense.. I just can't bring myself to start tinkering with diet. I struggled with weight and diet issues for years and part of my cure was to stop dieting. My weight is fine.. i'm not skinny but I'm normal- ish and i'm afraid to start restricting food again.. it messes with my head... the inside of it, I mean.
ellauk - when was the book you are referring to written.. I wonder if the newer research trumps it or if it is the newer research?

I too am wondering if acceptance is part of the journey. I'm not there yet, but am inching closer. I'm not sure I'm willing to take all kinds of toxic drugs. I'm on plaquenil and it makes me sick. Doxycyline makes my skin all over really itchy.. I had to stop it.

that's enough chatter for now.
if you can come to our conference- anyone - I'd love it!

Comment by PamW San Diego, CA, USA on September 10, 2012 at 7:49pm

My liver enzymes were not normal all summer - which meant that my body was not filtering correctly. Also just yesterday, I read that taking NSAID's may trigger Lichen Planopalaris. I know that there is an anti-inflammatory diet -- no sugar, sugar substitutes or animal fats. I finally have an appointment with a derm who treats alopecia. The first available is November 30! Can you imagine having to wait so long? CJ - how is the conference coming along?

Gave up wearing my topper. Too hot and everyone said I am crazy -- don't need it yet.

Did you ever notice how many ads (commercials) there are for hair products on TV?

Comment by ellauk on September 10, 2012 at 7:34pm

Hello Heidi and Celia. I take turmeric tablets from Healthspan.. one a day (although you are supposed to take 2 a day, but it's too expensive). I really believe FFA is an autoimmune disease like lots of other autoimmune disease. I think ridding the body of toxins or allergens is the only way to stop it. So I'm eating a gluten free diet. I'm going to research a way to detox properly, with the aim of ridding my body of heavy metals. Anything that can help with inflammation is good. So I take turmeric and green tea tablets. Cutting down on sugary foods helps to dumb down the irritation too. Stress is a big thing.. but controlling that is easier said than done. I live near Newcastle upon Tyne.

Hope everything goes smoothly with your move back to the UK Celia.

Hugs Ella xxx

Comment by ellauk on September 10, 2012 at 7:29pm

Comment by Heidi Short UK on September 10, 2012 at 12:42pm

Hi everyone I haven't been on for a while. I was waiting to hear from dr Harries unfortunately no reply yet! Hope the move is going well Celia where are you moving to, I live in Taunton Somerset, are you any where near and Ellauk where are you? Ellauk I looked into diet a few months ago ,but mine was the acid/alkaline diet which states that your body works at its best when it is in an alkaline state, It was trying to make your body work better to repair itself. I did it for a couple of months, but no change, I still try and eat more alkaline foods than not but I'm not so stricty with myself now. My initial panic of loosing my hair is now over and a sad acceptance has taken its place! At the moment people can't tell except when it s windy. I think It's going to be along time wearing a hair replacement so I personally am going to put it off for as long as possible!

Comment by ellauk on September 10, 2012 at 8:57am

I've been reading so much about frontal fibrosing alopecia and all it's relatives.. A new thing I've heard about is 'biofilms' that may be part of FFA. There seems to be a common thread though.. that it's an autoimmune disease which leads to the questions.. what causes the autoimmune disease and how do you treat it? My feeling is that it is heavy metals and toxins in the body that have confused the immune system causing it to attack invaders. I know that bio films have been found in hair folicals of people with hair loss.

It would be good to know if anyone has been on an elimination diet with the purpose of removing heavy metals and toxins (including chelation) and seen a change in FFA symptoms.

I personally have found that taking turmeric daily has helped calm down the redness around my hairline.

I also saw on the news recently that they think they will be able to 'cure' male pattern baldness in about 2 years' time. However, that doesn't help me if my hair follicles have been destroyed completely.

1. Has anyone cured their FFA with a detox diet?
2. Can vellus hairs become terminal hairs?
3. A single tab on this site with scientific breakthroughs please
4. Would any dermatologists/trichologists contribute to this site?

Thanks for reading.

Ella x

Comment by KarenGinny - Iowa, US on August 25, 2012 at 11:35pm

Pam - I've looked up the hair pieces you were talking about - easifringe or easibangs, and they look interesting. I just wonder if it is comfortable and like you said it can be hot. I just know it would give me a headache from having something on my head all day, but if it made me feel better about how I looked, I guess I could suck up a little pain right? Since I am a stay-at-home-mom, I wouldn't need to wear one all the time, just only when I went out. I've just gotten used to bringing a hat - baseball cap with me if I'm going to be outside in the wind. I suppose you wouldn't want to wear one of those if you went swimming right, I would be afraid of it coming loose and falling out.
CJ, the conference would be very interesting to go to and meet others with the same condition and talk to the doctors. But unfortunately I'm in Iowa and can't afford that kind of trip.
Ellauk - I've wondered myself if a change in diet would make any difference but not sure what kind of changes might help. I am 47 and pre-menopausal and have thyroid issues too. So I'm sure hormones probably have something to do with it.

Comment by PamW San Diego, CA, USA on August 25, 2012 at 6:59pm

Sandy, not giving up at all. i am going to the wig shop where I purchased it and she is going to see what can be done about the combs. I think you are ready for hair. If you are wearing hats, to hixe, it is time. You wont have to worry about the wind! The only reason I am having a difficult time is because I feel the combs (clips) and it is an extra layer on my head (no a/c in my class) and temps can be in yhe high 80's in my room. everone says they would never guess that I was wearing hair. Sandy, go try on some pieces and take a friend or your husband.

Comment by ellauk on August 25, 2012 at 6:28pm

I've been reading about auto immune conditions at the moment. It seems that they most likely are caused by toxins in the environment (based on a good book called 'The Autoimmune Epidemic'. Frontal Fibrosing Alopecia (which I'm sure I have) is an autoimmune condition strangely linked to hormone levels. I wonder if anyone with FFA has gone on a detox diet and noticed any improvement. Would be interesting to know.

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