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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.

Comment by PamW San Diego, CA, USA on August 25, 2012 at 2:40pm

Hi, CJ. I liked your video, too! I agree with Sandy, your hair cut is good! Everyone wears their hair in the way that flatters their face! I think it is awful that the dermatologist made you uncomfortable. Mine is so encouraging -- she insists that if we can manage the inflammation, we can manage the hair loss. I just wish I had HER confidence.

I have really, really wrestled with wearing the topper and I have come to the conclusion that people can either notice my baldness or notice my hair. Which would make you feel better?

Sandy, if you are looking into the easi-fringe, you should definitely try things on in a shop first. They will have color wheels for all the different wig manufacturers. If you have a bad experience with one -- try another!!

CJ - I live in San Diego and teach so making the trip to Toronto is not possible for me, but if you could keep us up to date that would be great. I would just love to hear from one of the doctors that it is actually possible to manage this disease. Just one success story --- just one!

Comment by CJ- Christine from Ottawa Canada on August 25, 2012 at 11:26am

Hi folks, I've been quiet for a while as we are trying to pull together a great programme for our skin/hair conference in Toronto this fall. There will be a section on FFA, in case any of you want to come up and hear from Dr. Jeff Donovan, a researcher in the field.Also sessions on self esteem, effects of these diseases on our families, what to do about staring, sexuality. check out the little video on youtube http://www.youtube.com/embed/_S74MyA_HFA
I'm in there in the middle section - you will see my hair all forward covering the hair loss.
Mine is like yours Sandy, although I think my forehead may be further up.
I can't face teh idea of a topper or wiglet yet. I had a horrendous meeting with a dermatologist a few weeks ago.. she basically said this is no big deal, suck it up and get a wig. I was so upset , I haven't been able to talk about it. She suggested that I shouldn't have gone to the CARF conference because that just filled my head... also it was only for people with 'serious' disease. Mine isn't that bad yet, but I fear what will happen if I don't try to stop the progression now.
anyhow, check out the video and if you like it, please 'like' it . we are raising money to be able to cover the costs for people who can't afford to come to the conference. Also if you can, please send it to everyone you know! thanks for being here!
Christine

Comment by PamW San Diego, CA, USA on August 24, 2012 at 8:16pm

Who said you are not photogenic?? You are beautiful. I wear my hair the exact same way. And, I am glad that I know what you look like. When I saw your picture I thought you were wearing hair because you cannot tell you have hair loss until you pull it back. I wear my hair exactly like you. Hmmmm . . . maybe I won't bother with my topper???

I have just been diagnosed so I am not as far along. I have loss more at the temples.

I haven't had a day without something involving my hair. Today I went to my hair stylist who said I stayed the same and I shouldn't wear the topper because I have plenty of hair. Also I waited over a month for my insurance company to approve a referral to a hair specialist. The referral came through, but when I called for an appointment I found out that she isn't accepting new patients. Back to ground zero.

Comment by KarenGinny - Iowa, US on August 24, 2012 at 10:35am

Hello everyone! Pam that's great that everyone thought your "new" hair looked nice, they probably didn't know it wasn't your own. On the hair thinning topic, mine has thinned all over but mostly in the right side of my head with a very thin patch on the upper back right side that I try to cover by combing my hair that way. My part seems thinner too but not too bad. But the worst part is the whole front hairline and temples, pretty much bald for 2- 2 1/2 inches back, maybe more. I do have a thin strip of hair at the beginning of the hairline, but my hairstylist suggested shaving the front part so the rest of my bangs blend in better. And of course that part keeps growing back. My hair has also been growing all over the rest of my hair at a normal rate. I've been letting it grow longer this summer and now I need a trim. I've also been coloring it as I normally do, I don't want to be grey and bald! I did start using Nioxin shampoo and conditioner for thinning hair, so I'll see if that helps. I'm not doing any other treatment right now since my doctor didn't really suggest anything. Hope everyone has a great weekend! We may go to our local Air Force base Air Show tomorrow and Sunday we have a Boy scout picnic we're helping at. Oh and I went to a rheumatologist to ask about the swelling and stiffness in my ankles and feet and he thinks it's a reaction to my blood pressure meds and not arthritis like I'd thought. So it wasn't as bad as I thought. :)

Comment by PamW San Diego, CA, USA on August 24, 2012 at 9:43am

Ladies, I am so amazed by your comments because we all have the same disease and we have are all being treated differently and I think be given different information. Here is the latest info from my dermatologist (as of yesterday):

I had another round of steroid injections and she thinks that my hair loss remained the same (no change). I feel like I thinned more on top (center part) but she disagrees. I am getting my hair cut today -- my hairdresser will know for sure.

I continue with the Plaquenil and Doxy. I only use the clobestasol foam when I am itchy. Celia - do you use it every day whether or not you are itchy?

My doctor said that the hair falls out because the follicle has already scarred. Once it is gone -- it is gone. You can't bring back your hair but the thought is to control the inflammation which causes the scarring. Why is there inflammation in the first place? No one seems to know. Some think auto immune, some think some kind of hormonal trigger, and some think toxic lipids because we are not processing carbs and fats properly.

I had crazy liver tests for the last few years and this month for the first time in years I had a normal liver panel! Yea for me.

The derm also told me that they really don't know if the meds help or if it is the patient that just gets better. Some people stop losing hair after being treated with plaquenil and some people don't stop losing hair even on the meds. And from what CJ said after going to the conference and meeting people with FFA, it doesn't sound too promising for us. I just can't wrap my head around that yet. I feel like I have to be hopeful that my hair loss can be stopped. I was referred to a Hair Specialist and am waiting to get an appointment. I will share any info I get.

In the meantime -- I love, love, love my eyebrows. I am less than thrilled about "my new best friend". After a few hours, it does feel like I am wearing a helmet. But, if I don't wear it now, I risk causing a major upset in my classroom and community if I suddenly walk in with new hair. My daughter told me to do what pleases me and not care what others think. Where did I get such a wise daughter from?

Thank you ladies for supporting me.

Now about my new bes

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