Comment

Comment by Heidi Short UK on September 13, 2012 at 12:57pm

Hi ladies I've just had a reply from Dr Harries!This is what he said
As I am sure you know this conditionely is relatively rare and causes permanent damage to the hair follicle.I have recently undertaken some research looking at the changes to the immune system in active disease and this suggests that the hair follicle may lose protective mechanisms exposing the stem cells to inflamation and damage. There are a number of similarities with this pattern of inflamation with other auto immune conditions, although FFA to date has not been designated in auto immune conditions.There has also been research on a similar condition, lichen plano pilaris, in America which suggest that a lack of PPAR gamma in the skin may be a contributing factor. (I don't know what that means!!!)
Treatment for FFA is difficult and there is no clear consensus on the best treatment option. It is likely that the condition probably does burn itself out at some point but it is difficult to predict.
He goes on to say he thought the idea about a database was a very good one,infact he is currently in the process of applying for funding to set up a National Scarring Alopicia database, which will cover a number of scaring conditions including FFA. The plan is that this will collect data going forward about natural history of these conditions and also link this data with tissue samples (eg blood or scalp biopsies).He is also currently undertaking a questionnaire study in FFA and it is possible we could be involved with it.
He also wanted the name of our web site as it could be benificial to other patients, so we could have a few more members soon!
I was really pleased that he answered my letter, although no miracle cure yet, there was a few new suggestions on why it is happening, and encouraging that they are actively trying new ways to collate data.

Comment by MairiM on September 12, 2012 at 7:52pm

The group might be much easier to get into if more use was made of Discussions. We could have discussions on wigs, medications, new research etc. It is frustrating trying to follow the different conversations that have gone on in the past. And, if I find something interesting weeks back, there's no function to comment on it or ask a question. I hope you don't mind this comment. I know we are lucky to have this meeting place - thanks for setting it up.

Comment by MairiM on September 12, 2012 at 7:16pm

Debs - I would say I am at the same stage as you. I too have lost an inch from my temples in the last 6 months, and a bit less from the front. How did you go about purchasing the wigs? Living it rural Scotland I would find that quite difficult. Did you find wigs very like your own hair? How did people react when you wore them? Dr Matt Harries of Manchester University was quoted as saying that steroid cream is much less effective than steroid injections. Cream is difficult to use anyway - difficult to know how much of the head to put it on, and the hair needs to be washed afterwards. I have seen online that some sufferers are using Propecia - unfortunately not licensed for women in the UK.

Comment by Debs on September 12, 2012 at 3:06am

Hi Everyone, am having a biopsy in a few days with a dermatologist to cnfirm FFA. Went to GP in Dec, very brusque and unhelpful. Just told me I had alopecia, didn't diagnose what kind, said no cure and sent me packing. I tried to get help at a private hairloss clinic in March, the lady there diagnosed FFA and told me to get a biopsy... It has taken since March for the NHS to give me an appointment. Since then I have lost about an inch from my temples and half an inch from my front hairline. I have purchased 2 wigs. Wore them both out last week for the very first time. I am trying to find and get used to wearing wigs now - so that in the future when I will have to wear them all the time I will have already done my experimenting to find something that is comfortable and looks OK. I have been told by the dermatologist that he will give me a high dose of a steroid cream!! I can see however that there are a myraid of treatments being tried and nobody seems to have a definate 'cure'. I know that for other types of alopcia some people have sucess with minoxidil... has anyone tried that? I am very interested to learn more about changing my diet to try and control the inflammation; but I don't know what foodstuffs would be a cause of inflammation to begin with... any info is most gratefully received. And, good luck Celia with your move, I am just up the road from you in Surrey, it is a lovely part of the UK you moving to. Debs xx

Comment by KarenGinny - Iowa, US on September 11, 2012 at 5:33pm

Hi everyone, it's nice to read all the comments. I guess that my FFA is probably related to auto-immune issues, but of course, I don't know that for sure. Last month I was having alot of trouble with my hands and feet hurting and my feet swelling up and being really uncomfortable. My regular Dr. sent me to a rheumatologist and he thought it was a reaction to my blood pressure meds and to take only 1/2 my regular dosage. And that seemed to help. I thought it was going to be rheumatoid arthritis, but maybe not. Ella, it's interesting that you are going gluten-free. I have looked into that but mostly because my 12 yr old son has autism, any many in the autism community think that following a gfcf diet has helped their kids. We tried it a few years ago, but it was hard since my son is so picky. But I would try it if I thought it might help with my hair loss. But I know the hair I've lost at the front is not going to come back. So I've mostly accepted that. Many people think that autism is caused by environmental toxins also. But in my son, it think there is a genetic factor too. It's all just so confusing isn't it?? I hope in my lifetime, some researchers can find a cure for all of these things.
I also wanted to say that I live in Iowa, in the midwest of the United States, and I have never travelled to the UK. But the neighborhood I live in is called Wilshire Heights and the streets are called Somerset, Essex, Victoria, Surrey and I live on Dorset Ave. I just thought that was kind of funny with so many of you being from the UK. Bye for now, Karen

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

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