The more I read here, the more I understand that none of these dermatologists have any answers. Rebecca, where are you in Germany? I'm originally from the south near Stuttgart but spent last summer working in Berlin. I teach German here in the States.

Those of you that did Dr Harries survey/study, when will you hear back? Is it possible to share any of the questions with the rest of the group to give us somethings to think about and ask our own Dr's? I know someone mentioned there was a question on how much time spent in front of a computer.

Morning :o) I have an appointment with Dr Harries 'or one of his team' on 15th March. I am concerned that I might not get to see Dr Harries so I phoned the appointment line and have been told that I will get to see him unless there is an emergancy elsewhere. Has everyone who had an appointment with him managed to see him? Is there anything else I can do in advance so that I can get to see him?
Liz
xx

Ok. Thank you :o) xx

Hi everyone I'm glad your day went well Debs, You look fab in your picture!I'm going to see my derm tomorrow is there any questions you would like me to ask. I think I will ask about diet, also the length of time I can safely be on my medications and if she thinks it is heriditary, oh and is it auto amune or not! Any other questions let me know.

Hi all, I just read the german article ( I`m german by background) and it is depressing. It sounds as though, based on this one case, where they tried everything including cyclosporine and thalidomide, the disease just carried on. There was a reference to our own Dr. Donovan`s research where there was some progress made with eyebrows via steroid injections.

I`m going to the American Academy of Dermatology meeting next month and hope that there will be some sessions there I can attend and see if there is anything new.... and more hopeful

I lost my mom to idiopathic pulmonary fibrosis almost three years ago. This is an autoimmune disease with unknown origin. Hence, "idiopathic", which in case you haven't seen this word before, means we don't know where in the world this comes from. It is a progressive scarification of the lungs and ultimately suffocates you. My sister and I took care of her during her final months and it is a terrible way to go. Why am I mentioning this here? Because autoimmune diseases might be hereditary, not the actual disease, but the propensity toward autoimmune disease. My mom's father died of Parkinson's (autoimmune). It has not been shown 100% that FFA is an autoimmune disease, but many believe it is and it certainly acts like one. In any case, what if what I inherited from my mother was actually a gluten intolerance which makes one susceptible to autoimmunity. What if? Apparently, people often get several autoimmune disorders and believe me, I have no desire to get IPF. There is not going to be a funded study on gluten intolerance. There is no money to be made from that and only studies involving drugs get proper funding and often physician support. Until someone figures out what drugs will magically cure this mess, I'm going gluten free to see if that helps. It may not. It may be too late, but I've been seeing physical changes in response to this diet and it's been only 3 1/2 weeks. I don't want to sound like a broken record, but I wanted to explain why I'm going down this path without a medical doctor's directive. My dermatologist at UNC hospitals knows I'm doing this and because she is smart enough and humble enough to admit she doesn't know if that has any connection, she supports my decision to pursue alternative medical advice as long as it does no harm.

what physical changes have you seen. I just started 3 days ago and ( ever the impatient one) haven't seen any changes yet. My gut still hurts at night and I still have gas worthy of a lumberjack. I also cut out dairy the other day - which ironically is much harder -just to see if my stomach would improve.. I can't help feel like you - that its all connected. While there is no family history for autoimmune, I already have several myself and have finally caved and am trying the dietary approach. I haven't given up wine yet though.

Hi ladies,
I'm reading with interest the comments about gluten free and particularly stress. When I had my first appointment 2 yrs ago with my specialist she asked me if I had experienced any particularly stressful events as she said it is reported stress can trigger the condition. Often we don't know how our bodies handle stress and I don't really think I have any more stress than some other people, however I had been going through some major life changes and situations the previous couple of years which I believe did create more stress than usual for me. My son also got married (which can be a stressful time one way or another). If I really think about perhaps a 5 year period before contracting FFA it was full of a lot of stressful events which are mostly part of life (including deaths in the family) that we often have no control over.
So maybe - if you put together emotional, environmental, hormonal and dietary stresses on our bodies they might impact on some people like ourselves by producing FFA. While this doesn't give us necessarily a treatment for cure it might give us some insight into changes we can make - like diet, that might help us. It sounds like some of you are having success with gluten free and in the last year I have noticed that milk products don't agree with me so I am trying lactose free milk etc. I think I'll try cutting down or out wheat also and see how that goes. Who knows it might help the hair condition too! Here's hoping. Love reading this conversation thanks to everyone for their ideas. Robyn

Jules, what is the 5:2 fasting regimen? CJ- I wouldn't give up wine quite yet - and I have no intention of giving it up forever. Frankly, I think you need it when you're going about making such major changes. I do think it takes a bit more than three days off gluten. I've been off for just about a month. My skin has cleared up significantly. I had been getting these middle-aged breakouts, especially on my forehead. I used to have strange itching on the top of my shin, which is gone. Occasionally had some sore spots in my mouth. Gone. And my moods are much, much more even. That said, while my scalp inflammation is down - I don't seem to have the red bumps right now - there is still a bit of inflammation and soreness in a couple of spots. I do think I'm losing a bit less hair, I don't have unrealistic expectations that this will magically come to a screeching halt, but I'm trying to be hopeful.

I also am following these discussions with interest. The gluten free diet is certainly worth a try but I need to wait a few weeks. I think breakfast is the easiest because there are lots of oat,rice &/or corn cereals, like Pam said.
I am studing the anti-inflamatory diet and stress relief as I
had a heart attack 6 yrs ago, have severe arthritis and was recently diagnosed with PTSD after finally seeking answers to past stress .... so sounds like I am falling apart (I really am not and I count my blessings that I am still pretty healthy) but my point is: stress & inflamation have been definitely a part of my life, so I agree with it affecting the auto-immune system.
There is lots out there about the anti-inflamatory diet, like Pam suggested Dr Weil and others - do a search. I do know it is very important to cut out white flours, rice, pasta (brown and whole grains are OK)and processed foods, especially sugars. Lots of fruits & veggies and I would think, Pam, that red white and even dark chocolate is good because they keep recommending them for a healthy heart. Also coffee and tea. It goes on & on.

I had time today to check out information relating to autoimmune disease so I could relate that to your discussion. I came across a website www.sarahwilson.com.au that describes this persons journey combating autoimmune disease. As it turns out I have recently ordered her book "I Quit Sugar" purely because I think I need to cut down sugar, and didn't realise this was the same author until I looked further through her website. While this isn't necessarily related to FFA (and FFA isn't mentioned) there seems to be some similarites about some of the symptoms everyone has talked about in these discussions and certainly links to theories about inflammation, gluten free and autoimmune disease. I thought you might like to take a look at the website as I found I could identify with it in regard to what's happening to my body at the moment. If you get a chance see what you think. Robyn

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

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?

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!

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!

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

Are we entitled to a nhs wig?

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

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?

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

People have mentioned stressful events (health/loss of family member)near the onset of their hairloss. Did anyone have any major health events as a child? Just thinking that maybe our immune system got whacked out early in life and as we age, these auto immune things start popping up. I had pneumonia and scarlet fever as a very young child and I think I had allergies issues early on too. I'm sure stress can play into this disease too. Everyone reacts differently to it. I just can't think of anything that stressful that took place just prior to the hairloss. There has to be more than one issue here. Sleep depravation can do alot to a body too over years. It could be some preservative/chemical we injested years ago that has slowly attacked our bodies. Many of us in my age group (at least in the US) I think lived on boxed, frozen, processed foods growing up. It was popular to have these easy to fix meals when all our mothers went to work. There wasn't the time to fix foods from scratch. Cancer loves sugar, so who knows what else it does to your body. Just a few rambling thoughts - thanks for listening!

Susanne,

I sent you a message but am not sure how it works. Did it arrive in your inbox? I'm interested in who you see at UNC.

Alice

Celia, hi there, I have been back at work after my 5 week break so I have not been online for a few days... I have now been in the wig at work for a week, I was at work this morning and it is unbelievable that I can stand right next to someone chatting away and they are asking me where I had my hair done!!!! PJ, I did not have any problems with my health at all in the run up to getting FFA, I did not have any stressful events either... when I noticed the initial recession on my temples I just thought it was the menopause starting and part of the ageing process. It is so good that there are now 38 of us to share info with. Good on Celia for starting this group up.

My mum reckons that the hormones we absorb might have a part to play. Those such as in the contraceptive pill and in the foods we eat. I'm a big milk drinker and I dont think this can be good and the stuff they feed animals before slaughtet would makybe make us wince if we knew the details. Does anyone have FFA more on one side than the other? The right side of my head is at least twice as affected than the left.Half my right eyebrow has gone too. In addition to this I have problems with other righthand areas of my body. My right eye, my gall bladder etc. Does anyone have gall stones? Also, a weird question I know, how many of us are left handed?
xx

Welcome, Simone and hi, everyone. Celia, I have to say, I've been better at reducing my wine intake, but I haven't stopped it completely. We have to have some pleasure in our lives. There are mixed messages about red wine as inflammation-reducing/inflammation-inducing. I'm trying to only have that glass with food. What a lot of people are saying about sugar fits with what my nutritionist told me about having to be sure I don't have so many sugar highs and lows - she thinks that's part of what got my system out of wack because I often eat breakfast, don't have a good lunch, but then eat again in the evening. I've never had diabetes, but my dad has had some blood sugar issues, bordering on diabetes and he's completely controlling it with diet and exercise. So I'm trying to be moderate in my sugar-intake (only small treats after having eaten something real), limit alcohol and then I'm still off gluten. I'm also eating some beef stock every day which I make myself (lots of minerals and gelatin, which is good for hair and skin.) My hair loss seems to have slowed down and for the past several days I've had no inflammation at all. I'm sorry if I'm repeating myself too much, but I just wanted to post an update. The tricky thing is that I've made quite a few changes, so it's hard to say what's helping, but it does seeem to be helping. Time will tell... All the best to everyone!

How do I know if have any inflammation or not?
x

Liz - redness.

Hallo again :o) Did anyone who has seen Dr Harries at Salford, stay the night in a hotel? If you did, what one and would you recommend it? xx

Thanks Jules. I shall stay at the Travelodge :o). I've tried to take a picture of my forehead to show the bumps but it doesnt come out very well. I have no redness or itching and never had had. The bottom of the picture is where my hairline once was.
xx

I've been lurking for a while and finally decided to post a comment for the group. I am 61 years old, live in the US and have had FFA for about 1 1/2 yrs.

About 6 mos ago, I talked to my dermatologist about a woman in Greece w/ FFA who was successfully treated w/ Avodart (a prostate med) and Elidel (a cream for eczema). See http://www.dermattikon.gr/magazines/_1/KATOULIS%20EN.pdf.

She gave me some samples of Elidel and it has helped my eyebrows. One was noticeably thinner than the other and now they are nearly the same. I still have some itching and soreness, though.

The next time I went in, my doc had done some research and offered me a prescription for Avodart, but I wasn't ready to go that route yet. She does have one patient taking it, so I plan to ask about that when I go back next month.

I have quite a bit of itching and soreness all over the top of my head but find that tea tree oil helps. It seemed worse when I was using Nizoral shampoo and topical Clobetasol. I think they must have been too irritating.

Has anyone else tried Elidel for their eyebrows or tea tree oil for their scalp?

Alice

Hi, Celia. Elidel hasn't helped my hairline, either, but has helped my eyebrows. I still use pencil to fill them in but can pass for normal w/out it.

Liz - I have the same look too. I looks like this and then it falls out. No itching or visible inflammation.
Simone, I have been getting my wig info from a site in the USA, WWW.WIGSUPPORT.COM the ladies on there are fantastic. They post photos of themselves in different wigs, tell you the name, brand, where they got them, how to shampoo, cut, style them... literally any thing you can think of they will have the answer. It also has helped to normalise wearing wigs for me by seeing how beautiful those ladies are.
In the USA you have great wig brands and online suppliers. The wig I wear to work is a Jon Reanu wig called Ignite (the wig in my photo is a Julia wig also by Jon Reanu) have a look at www.wigs.com that is a good website with lots of wigs, I would also then just input the name and brand of a wig you like into the internet search engine and see if any other site has it cheaper.

I am sure the hormones in food is detrimental to our health and it does make sense that it could be related to our FFA since this condition affects women close to menopause or post-menopause. I hope that now Celia has given us so much help and info to get to Dr Harries there will be enough of us to really get some more research on FFA.