Comment

Comment by MairiM on September 14, 2012 at 5:25pm

Anyone else see Rosa Monckton interviewed on BBC news tonight? Her hair looked just like mine. For those not in UK, she was a friend of Princess Diana and a great campaigner for disabled rights, I wonder if she has written anything on twitter about hair - I don't twitter myself.

Comment by PamW San Diego, CA, USA on September 14, 2012 at 12:52am

PPAR gamma is a gene, which they think goes haywire and may cause the inflammation. I believe the thinking is that the gene malfunctions due to improper processing of our lipids. Actos is an inhibitor which supposedly keeps our body metabolising carbs and fats properly.

This is why I always thought my low carb, low cal diet might have triggered something. Some people have had success with Actos and some have not.

I am wondering if there could be more than one trigger, which is why some drugs work for some people and not for others.

Comment by MairiM on September 13, 2012 at 3:30pm

Ella - I have drunk a mixture of green tea and ordinary tea for years and it hasn't saved me from this :-( I think I will give the turmeric a go, though. Also taking a mixture of Omega 3 and Omega 6

Comment by MairiM on September 13, 2012 at 3:21pm

Great that he took the trouble to reply. Somewhat depressing too, as his response in the newspaper article was the only positive one I've seen on much searching of the web. Now it seems he has no more answers than anyone else. At least if he gets his funding (and data from us) there may be hope for future victims. Any results would be too late for us, I fear. Thanks for copying the info to us.

Comment by ellauk on September 13, 2012 at 2:53pm

This is great news. Personally though I don't think it is so rare. You seem to see quite a few people with jagged, thin hairlines. I personally think turmeric and green tea help lessen inflamation. I don't know if other people find that too.

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

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