Comment

Comment by Alice on March 30, 2013 at 10:25am

Jules, How often do you shampoo your hair? I'm confused about whether it's better to do as little as possible to one's hair or wash it every day. My hair is quite dry, so doesn't need frequent shampooing, but I've also read that one of the theories of FFA is that toxic lipids build up in the hair follicles.

Comment by PJ - MN, USA on March 29, 2013 at 11:11pm

Jules - I just want to comment on the steroid injections. I seem to be one of the few that have reported some regrowth on my front hairline and temples, none on the eyebrows yet. At the time of the regrowth, the treatment plan was the steroid injections, rotating between DHS Zinc Shampoo and Head & Shoulders Classic Clean shampoo, using Free & Clear Conditioner and Free & Clear Hairspray. I didn't get the indentations until I think my 3rd round of injections. In my case I think it depends on who does them as to whether I get dents or not. My Derm is at a teaching hospital so you have residents that do them sometimes. I have one in the middle of my forehead along the hairline that isn't going away, otherwise the rest are slowly disappearing. Luckily my hair covers it yet.
The key though is to catch things before the hair follicles are blocked/scarred and only the Dr's might know when that is.

Comment by Debs on March 29, 2013 at 2:08am

Celia, I went to the Belgravia Clinic in London to get a second opinion and one of their trichologists knew I had FFA literally as soon as I walked in the door.

I am very pleased Dr Harries is speaking at Edinburgh, when I saw him in February I had some photos taken - just of my scalp nothing that could identify me for his research... maybe I will be famous now he might use a photo of my poor head during his lecture!!!

Happy Easter to you all.

Comment by Kath UK on March 28, 2013 at 5:48pm

Hi everyone. I've just seen on the internet that as well as the Dermatology Conference there will also be the 7th World Congress for Hair Research held in May this year in Edinburgh. It looks like Dr. Harries will be speaking at both events. Wouldn't it be great if some new treatment for FFA came out as a result of these meetings?

Comment by Simone NJ USA on March 27, 2013 at 8:43pm

Hi CJ:
Welcome back..I agree with you...I would want someone to approach me if they thought I had FFA! I have noticed quite a few women with what I think is FFA...and for the future...I will definitely step out of my 'box' and approach them...it could save them from more hairloss....with more awareness, maybe doctors will work harder to find a cure for this disease..thanks CJ xx

Comment by CJ- Christine from Ottawa Canada on March 27, 2013 at 8:10pm

"Christine from Ottawa Canada,
HI Ladies, I've been absent for the last while - in part too busy with work and in part.. taking an FFA break. I'm not on any systemic meds at the moment and am not super at applying stuff at night either... my scalp is itchy and sensitive ( I also have LPP).
I wanted to comment on how/if we should approach people we see with hair loss... question.. if someone had approached you before you were diagnosed and gently suggested you get your scalp checked out.. even if you had been offended for a moment or two.. wouldn't it have made you think.. wouldn't it have made you go and see a doctor? Ultimately, even if you might have had mixed feelings about a 'stranger' approaching you, wouldn't you have , (especially if the diagnosis was FFA and you could save some hair) inwardly thanked that person for their consideration. I challenge us all to get past our own awkwardness and fear, and reach out to those who are dealing with hair loss, and encourage them to go see a doctor and get a biopsy.
Its quite likely that like many skin diseases, ours is one that has an element of shame or embarrassment to it and so we are nervous to speak out about it.
I think we all know deep down that shame has no place here and that we are all merely people living with a particular disease, just like those who live with diabetes or high blood pressure - just ours is visible.
we improve things for ourselves and those yet to be diagnosed if we come out of the closet, we speak up and we reach out.
after all we are worth it!

Comment by PamW San Diego, CA, USA on March 27, 2013 at 6:49pm

I agree with Celia, we need a famous face for our cause. I cannot go anywhere without staring at women's hairlines. I can't believe how many women in their mature years are blessed with a full head of hair. Also, have you ever notice how some "mature" women don't brush the back of their heads. I want to stop them and say don't you realize thatbyounhave hair back there? Gosh, I am going hair crazy!

Comment by Debs on March 27, 2013 at 3:41pm

Jodie, I think quite a few derms have incorrect ideas frankly about FFA not affecting women from black/Asian heritage, I know of 2 other black women apart from myself with FFA and I think Asian women would be just as likely to be affected by FFA. If a derm hasn't seen someone from a minority group with FFA they seem to think we don't exist, this is a worry because it is not at all scientific in their approach to FFA. I have seen quite a lot of Asian women with other types of alopecia over the years and I have a feeling that for various cultural reasons they might not be inclined to seek medical assistance. I don't smoke and have never smoked. I have also mentioned before on this site that I have seen quite a few women in supermarkets and out and about with what looks like FFA, I am convinced it is quite a common type of hair loss these days and just very much under-reported as well as undiagnosed, my GP didn't know about FFA, I was diagnosed when I went to a private hair loss clinic in London for a second opinion. This meeting in Edinburgh is great news. I would also like to attend if it is something that is open to the public. Lets hope that if these derms are comparing notes we will get a more effective protocol for treatment.

Comment by Kath UK on March 27, 2013 at 1:36pm

Hi everyone. I'm near Edinburgh and my dermatologist is based in Edinburgh Royal Infirmary (Dermatology Dept.) I'll ask her about the conference when I next see her (beginning of May) - maybe she'll go to it. When I last saw her she did say that derms were seeing 'quite a few people with this problem' though when I first saw a derm (about five years ago) he said it was a 'very rare condition'. I wonder if a lot more people are getting FFA or if it has just not been reported in the past (especially by older ladies who might have thought, as I did at first, that it was just part of the menopause or ageing generally.)
I have never been offered steroid shots, by the way. The only drug I was offered in the past was ciclosporin - which I refused because of possible side-effects. I've had FFA for about eight years but wasn't diagnosed until five years ago (diagnosed as Lichen Planus at the time). Nobody seemed to know much about it then and most of what I learned came from researching it myself on the internet. The latest derm I've seen has suggested hydroxychloroquine. I've lost a lot of hair from my forehead and am at the stage of investigating wigs. In my health board area we can have up to 4 modal/acrylic wigs free a year but I will look at natural hair wigs too as I think they look so much better. I won't get one of them unless I pay for it myself, however.
Good luck to all you ladies out there with your treatments.
I think this support group is great. It's reassuring to feel that you're not the only one in the world with this problem!

Comment by Jules UK on March 27, 2013 at 12:21pm

Thank you for your help with comments about the steroid shots. I don't think I'll have them after all. My homeopathic treatment is a little crazy and not at all what I'd expected. As well as tablets, I have had several sessions which are more akin to therapy, discussing emotions/stress and even having a magnet waved over me! But if it doesn't do any good, it won't do any harm, at least.
Jodie, I have never smoked, not even to give it a try.

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