Comment

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.

Comment by Liz on March 27, 2013 at 12:11pm

Hi Caro. Dr Harries told me that the thinning hair on the top of my head is due to female pattern baldness and that although the FFA and thinning are sometimes seen together they are seperate issues. It'll be interesting to see if it has any effect. I'll probably just absorb it in to my scalp and grow a fine moustache and a couple of sideburns!
xx

Comment by Caro UK on March 27, 2013 at 12:04pm

I hope my derm is going to the conference. I'll ask him at my next appointment. I suspect there may be many more women with this condition who remain undiagnosed. We are all pro-active on this forum and have sought help from our doctors and either been referred by them or asked to be referred to a specialist. In my case part-way through last year I realised something was not right with my hair. (At this point I had never heard of LPP or FFA. I thought I had Androgenic Alopecia). I researched on line for a local consultant dermatologist who specialised in hair loss and then I went to my GP and asked her to refer me to him.
Liz I'm interested that Dr Harries has prescribed you Minoxidil. I asked my derm about using this on the crown of my head where the hair is thinning. He said that the hair on the top of my head was being lost due to LPP and therefore Minoxidil would have no effect. Some derms are prescribing Minoxidil as an additional treatment and some are not. It is very confusing!

Comment by KarenGinny - Iowa, US on March 27, 2013 at 11:44am

Hi everyone, I wanted to comment on the steroid injections. When I first went to a dermatologist in Jan 2011 it was because of having a very dry, itchy scalp and I thought it was dermatitis or scalp psoriasis. I first tried Dermasmoothe oil treatment - very messy, and then clobetasol topical liquid and clobetasol shampoo. This helped my scalp. Then I noticed a strip of hair along the back of my neck had fallen out - my forehead and temples were okay at this time. My doctor started giving me the steroid injections to the front of my scalp along the hairline and temples. I had these every 6 weeks for a few months. My hair must have been thinning then but I didn't really notice. After the 5th round of shots I didn't see any improvement and realized my insurance wasn't covering the shots so I stopped getting them, and my itchy scalp was improved so I didn't go to the dr for a while. That fall I noticed my hair at the temples pulling out with hardly any effort and seeing round patches of hair loss on my forehead. I was going through a lot of stress at the time. I was worried about the cost of treatments, but eventually went back to the derm in Feb 2012 with lots of hair loss in my front and temples, got a biopsy and diagnosed with FFA in March 2012. Derm said there was nothing to help since the follicles were dead, and didn't recommend any further treatment. He said there were some RX drugs but didn't recommend them because of side effects. He'd only seen a few women with this problem. So I my opinion the shots I got didn't help as I got them prior to the hair loss and didn't stop it. They were painful, but not terrible and I don't notice any dents, but it has been over a year and a half since then. So now a year later, I've had no treatment other than using T-Gel shampoo to help my scalp, and my hairline has receded quite a bit but seems to be staying the same for now. I do keep thinking about going to a different Derm for a 2nd opinion to see if there's anything I can do to keep the hair I still have. - whether Rx or Rogaine. Sorry this is so long! Karen - Iowa

Comment by Jodie UK on March 27, 2013 at 10:03am

Hi Liz,
The conference in Edinburgh is for all the top derms from around the world, hopefully they can all put their heads together and come up with some effective treatment for us, as this condition seems to be getting more and more common, my doctor also told me a few interesting facts, that she has no Asian women with this disease and also all the women she has seen with this condition are non smokers. do any the ladies in the group smoke?

Comment by Liz on March 27, 2013 at 9:17am

It's great that you are feeling better Debs. It does take time to come to terms with having this condition. I've become hair obsessed since having FFA which is weird because I wasn't when I had more hair! Yesterday I had exam practice which was infront of a camera. Not only was it in front of a camera but I also was able to watch myself. All I could focus on was my shiny balding head. Anyway, next week I shall wear a headscarf.
Good news today that I managed to get a prescription for Minoxidil from my GP. Dr Harries didn't think I could get it prescribed but I did and also managed to get the 5% strength. Fingers crossed it helps.
Hi Jodie :o) The conference in Edinburgh sounds interesting. Can we go to it?
xx

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