Hi Liz, you mentioned wispy bits of hair at the hairline - I have that. All along where my hairline starts I have a pencil thin strip of hair that is still there and still grows, from in front of my ears, temples to my forehead. I've left it there for the most part because I guess it helps me blend the rest of my hair in to it. Except I started shaving the very front of my hairline since it showed through my bangs that I tried to cover the bald areas with and looked funny. And of course that thin strip of hair keeps growing back, when just behind it is bare scalp that goes back about 1 1/2 inches all around. The rest of my hair is growing as usual except for a thin patch on my back right scalp. My eyebrows and lashes have stayed in good shape. I've also been taking Biotin when I remember but don't know if it's really doing anything. Someone mentioned this being a condition among middle to upper class women, and that may be, but I'll bet there are many lower income to poor women who have it but simply can't afford to see doctors or dermatologists and have it properly diagnosed, or figure it's just part of getting older. I think for men too it's more socially acceptable to be balding, whereas for women, we are supposed to have thick beautiful hair. ??

I thought about that comment also - upper class women having it more often. Actually kept me awake. I was trying to figure out what the difference could be. My only idea was air travel, altitude or toxins? Maybe stress? Just guessing.
I think Karen's idea of lower income not being able to see a dermatologist is probably right. In my case I have Medicare but most of you in USA do not and it would be expensive to see a specialist.

Hi everyone. I took a deep breath and got my haircut today. It's the first time I've had it cut since my hairloss started to show more. A lovely student was cutting my hair who has one more haircut to do before her training is finished. She was very lovely about my hairloss and showed me ways to brush it to hide it better. One thing I found interesting was that she had never heard or been told during her training that there is such a thing as scarring hairloss. She was led to believe that in all forms of alopecia the can grow back. It's a shame that hairdressers who are training now seem unaware of this condition.
x

Hi ladies,
Thank you for the best wishes on our new granddaughter! I have been reading the discussion with interest and there are certainly a lot of theories about aspects of the condition which I think helps us to maybe recognise aspects of our own particular circumstances. Liz since I was young I have suffered from heyfever and in my 20's asthma(mild). In the last 10 years my asthma has been non-existent and in the last 2 years my heyfever has reduced so much I really don't think I get that anymore - it makes me wonder whether the Planquenil I have been taking for almost 2 years has anything to do with the heyfever disappearing - it could be a co-incidence of course (a positive side-effect from medication for a change would be good though!) I'm not sure about the shampoo theory as I have used all sorts over the years. I agree with others about the economic circumstances dictating whether women follow through with medical treatment - many of us I'm sure hesitated to get advice as we saw it as such a 'small thing' to worry about given other more serious diseases. I certainly felt that way when I saw my specialist, particularly after my GP (female) thought it might have been my hair straightener pulling my hair out....although she did give me a referral to the specialist "just in case I was concerned"! Needless to say I don't see that doctor anymore! I also agree that FFA has probably been around forever, but in generations before us women have accepted this as an older age condition. When I was much younger I do recall seeing ladies with what looked like a receeding hair-line which I suspect was FFA. It sounds to me like we are very resourceful women, particularly when it comes to grooming so it's great to hear what others are doing to minimise the appearance of our 'receeding tresses!' Thank you for all this great information. Robyn

Celia, I am sorry to hear the bad news about your sister-in-law. The fact that she has a diagnosis and can begin treatment immediately is one positive I guess. I wish your family the very best in the coming months.

Sorry about your news Celia. Sounds like she's a very strong woman and a survivor, having gone through this before. Keep positive thoughts!!

I was wondering if there is anyone in this group that has never dyed their hair. I have for the past 20 years. I went to get my haircut yesterday and right away my hairdresser mentioned something was going on, she pointed out more hairloss on the side of my face on my hairline. So much for my Dr saying I looked better. Who do you go by - your Dr that is a hairloss specialist or the woman cutting your hair for the past 22 years every few weeks? My hairdresser is the one who encouraged me to keep looking for the correct diagnosis when I was first told I had Alpecia Aerta. She didn't believe it. She also feels I should stop dying my hair, but I am really gray for my age. Has anyone stopped dyeing their hair and noticed any improvements?

Pam I poised this question about hair dye on a UK based alopecia website and I had ladies tell me they had never used chemicals on their hair and had FFA. Like you I have dyed my hair regularly over the years. My derm has asked me not to as he believes that the chemicals women use on their hair in modern times may well be a trigger for FFA. I have not dyed my hair since I first saw him last July - it has not made any difference. Since I am wearing wigs now I am not going to dye it in the future and am using sulphate free shampoos to try to be gentle on my scalp.

Hi everyone I haven't been on for a while I've just come back from a skiing holiday in Les Arc in France. It was lovely not thinking about my hair all the time, only when I took my hat off!. I had more important issues to worry about, like how am I going to get down this slope without taking out all the other skiers on the mountain! it's only the second time I've been but I really enjoy it but I wish I was better at it!
Well there has been lots of conversation, Celia I'm so sorry about your sister in law I'm sure she will be fine she sounds a strong lady.Congratulations to Robyn on your new granddaughter you must be so proud! Debs, I love your new photo I can't believe that you are wearing a wig, you give us all confidence that if the time comes when we have to wear one we can look that natural too!
I was told that dying my hair will not make any difference now as the damage is done below the skin, but I have dyed my hair since I was 18 as I had my fist grey hairs when I was 16!
I have had hayfever since I was 23 and over the past few years I have suffer throughout the year with inflamed nasal passages and in the last couple of years I suffer from really itchy salivary glands which swell and I look like a hamster after I eat certain foods! So yes I am definately one who suffers from allergies!

Hi Celia, I have 3 different brands of shampoo/conditioner for synthetic wigs. I am in no way an expert on this... I use the Jon Renau shampoo last time and their conditoner to stop static, I am happy with the result, I also have some Gisela Mayer that I have yet to try. I have purchased it from any online wig supplier - they all sell styling products. However, I have been advised by a wig salon that they use baby shampoo and fabric softener for all their wigs and it works just as well. The wig in my photo is Julia by Jon Renau, I bought it for a bit of fun from the wigtrendz website. Glad you had a fab holiday Robyn. I have only been skiing once and I am too much of a wimp to try it again.

Hi ladies,
Celia I agree, a grandchild is definitely a distraction from my FFA (and any other worries for that matter). I've had a lovely couple of days visiting the new family!
I would like to add to the steroid injection comments. When I was first diagnosed (2 yrs ago) my specialist said she would not do steriod injections for FFA as these were generally only successful with alopecia areata.
I doubt that my specialist is an expert by any means but I do respect her opinion as she has admitted this is a difficult disease to treat given that there is limited knowledge about it in the medical world. The use of Planquenil seems to be slowing it in my case - however we don't really know necessarily if that is how my situation would have progressed anyway as it was diagnosed very early. Hearing your comments it sounds like she might be right about not having the injections. Enjoy the gardening Celia - hope the weather improves I understand from relatives in Devon it's been quite awful! Very hot last week in Melbourne, but Queensland is now flooding again which is devastating for those people. Robyn

Hi Rebecca. My mum has it too. She's had it for maybe 4 or 5 years and she's now 71 x

Hearing that the Protopic made things worse is worrisome. Oh no! I just got back from a follow-up with my Acupuncturist/Nutritionist, and we've determined that things are definitely better and she once again emphasized that for people with autoimmune conditions, gluten has to go, so I'm really committing myself to a life without it. I figure I've been around 52 years, I've had a lot of bread and pizza, I can do this. She wants me to curb my 1-2 glasses of wine/night habit and that's going to be hard, but February I'm taking it for a test-drive. Jules, good luck with the gluten-free diet. There are a lot more products on the market now since Celiac's disease seems to be more widespread. It's so much easier.

Hi All
When I first went to my private dermotologist back in May 2012, my daughter came with me, she asked him face to face, is this disease heriditary and he said NO! He did however say, auto-ammune problems are heriditary. The confusion gets worse! We are getting such mixed messages, I will ask my dermotologist the same question next week and see if she says anything different! Has anyone got any questions they would like me to ask? My mum didn't suffer from FFA!

I dont have my appointment through, with Dr Harries, yet Celia. I think I may give Gluten a miss. When I've looked in to it before it seems like it's in everything. I've bought a couple of books on the kindle on the Paleo diet (I think that's what it's called). I haven't looked at them yet but maybe they'll be helpfull.
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I'm finding this interesting regarding trying a gluten free diet to ease our symptoms. Since I have a son who is autistic, I've read alot about some people going on a gluten-free,casein-free diet to improve symptoms of autism. It sounds like some people are genuinely allergic to gluten- "celiac disease", while others are bothered to a lesser degree. We tried the diet with our son some years back but it was difficult since he was so picky. It was hard to find substitutes for things he liked. But now it seems like it's become more popular and there are more products out there to take the place of gluten. Most stores have a health-food section with gluten free products. Of course mostly a person just needs to eat healthier, fresh fruit and veggies, low fat dairy and protein, etc. I found this link interesting - Anti-Inflammatory Diet (Sjogren's Syndrome Foundation) I should probably try to do this.

Hi Celia, I see Dr Harries on 22 Feb. I will ask him about gluten free diets... I am going to work today, wearing a wig for the first time at work, I feel physically sick at the thought of people looking at me. Going out socially with my friends/family is fine as they are all on my side if you know what I mean but work colleagues can be different. Oh well... off I go to face the music. XXXX

Good luck, Debs! Rebecca, I would be curious to know what your dermatologist thinks FFA is, if it's not an autoimmune disease. Why would our immune systems be attacking perfectly healthy hair follicles? I do agree that we don't know if the gluten-free thing works and I'm not far enough into it to be able to tell. I can tell that I'm less depressed and my skin has pretty much cleared up completely. So there's something to it. As far as FFA goes, time will tell. In any case, here's wishing all of you ladies on this post strength and courage. Have a great weekend.

Rebecca, I know from your previous posts your are having steriod injections, is your dermatologist in Berlin giving you any of the drugs that Dr Harries in the UK is using to treat FFA - doxycline or planquenil ? These 2 dermatologists are both seeing lots of ladies with FFA so I am curious if they are using the same treatment regimes.
Well, my first day at work in a wig went without incidence, a few people commented that I had a new hair style and said it look nice, I wore a short chin length bob wig that is smart and very understated, I feel like a huge weight has been lifted off my shoulders now I have got that over and done with. Have a lovely weekend everyone. XXX

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.
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Are we entitled to a nhs wig?