Replies to This Discussion

Permalink Reply by Debs on September 21, 2012 at 2:38am

I had to get a new passport photo taken yesterday. I went to a photo booth in a local supermarket. I was comparing my photo taken yesterday with a couple of ID photos I had taken about 7 and 4 years ago. To my amazement you can't tell any difference in my hairline. That of course is because I have my hair pulled forwards. I can't wear my hair back in a hairband any longer because the bald spots at my temples are noticable and my hairline looks about half an inch too short. I think the anticipation of losing my hair is in some ways worse than actually losing it. I keep looking at my hairline and hoping it isn't going to recede any further.. whilst knowing that it will. I really don't think I can get much emotional support from my friends (they are brilliant supporting me with other problems) because they just don't get it. I am also aware that I am going to bore the pants of them if I keep going on about my hairloss... I am going to keep quiet about it now. I have told 3 close friends and my brother... I don't need to divulge this to anyone else. When/if I have to go into wigs fulltime then if people notice they can just think it is a fashion statement and not for necessity. I don't know why I feel having hair loss is something to be embarassed about, but I feel very sensitive about it and don't think I will change this position.

I too am an extrovert and I don't want to allow this condition to affect my enjoyment of life. I am cabin crew - so I am on show all the time at work - however, my passengers don't know me so they will have no idea that my hair looks different if a go into a wig and my colleagues work with a different team of people every single day so we often don't see each other for months or even years at a time, so they don't have a fixed idea of what I look like. So if I look different they won't have seen me for a long time and won't notice the difference too much.

I can't really imagine in my minds eye what my hair will eventually look like. I have all sorts of extreme images in my head. If I could get an idea of how bad things will get I could try and get a grip on this but it is the not knowing that is stressing me out. That said, there are some photos on the Belgravia Clinic website for this condition that are pretty graphic, although of course they may well have posted the most extreme cases in order to get you to part with your money and try their treatments!!

I think being able to share our feelings and knowing what treatments other ladies are using and what effect they have is reassuring. Thanks goodness for this group.

Permalink Reply by MairiM on September 21, 2012 at 4:58pm

If I thought it would stop now, I could cope. You are right - it is the uncertainly (and the graphic pictures online) that is stressful. I have enough hair to cover the loss at the moment - but was embarrassed at the hairdresser yesterday when I was left sitting for half an hour with my hair pulled back when getting my colour done. The youngster who blow dried my hair had wonderful extensions, but I couldn't afford £250 every 3/4 months. Asked them about wigs/pieces but they don't do that - think I will have to take a trip to Edinburgh to see what's available. I keep thinking of having to go to bed at night with only half a head of (grey) hair :-(

Permalink Reply by Debs on September 25, 2012 at 6:12am

Hello Ladies, I have been noticing that a lot of women seem to have a hairliine similar to mine, a few women at work have definately receeding temples in exactly the same place as I do. I was watching TV on Sunday morning and saw the broadcaster Saima Ahmed with very thin hair at the front, it looked indentical to my hairline about 2 years ago. I sincerely hope she does not have FFA but it definately looked like it to me. I think that this condition is likely under diagnosed and also under reported because many ladies may feel to self conscious to consult their GP about hair loss. I think we are just the tip of the iceburg. When the medical community realise how extensive this conditions is maybe more attention will be paid and more research done to find a cause/cure.

Best wishes to you all.

Permalink Reply by MairiM on September 25, 2012 at 3:46pm

The consultant I saw yesterday said that he is seeing lots of this - often with a wrong diagnosis from the GP. Two GPs at our practice had never heard of FFA.. I meant to tell you all that he said my symptoms were classic he didn't need to do a biopsy. That is significant for you, Debs, as a lot of time is going by while you wait for results. I get my meds tomorrow.

Permalink Reply by KarenGinny - Iowa, US on September 25, 2012 at 6:03pm

When I was diagnosed with FFA in March of this year, I had been having the red, inflamed scalp, itchy and dry for a while, with gradual hair loss all over but more at the temples and front. My dermatologist did a biopsy and when I went back for the results he said it was FFA and he didn't recommend any treatments.He said there were some drugs being used but that they had bad side effects. My scalp has calmed down and only gets a little itchy so I use a medicated shampoo- Neutrogena T-gel. But I am not on any medicine or treatment for it. He said he had only seen 2 other cases before and I live in a fairly large metropolitan area - Omaha, NE. So I feel that there is nothing I can really do now, just accept it. I know it could be a lot worse, I know this isn't a life-threatening Deadly disease but it really hurts my self-esteem. I just have to hope it doesn't get any worse than it already is. I wonder if this is becoming more common and what the cause is. Probably environmental &/or auto-immune related.

Permalink Reply by MairiM on September 25, 2012 at 7:04pm

Has anyone really suffered bad side effects from the steroids etc.? I know both Chris and Pam (I think) mentioned thinning of the skin. I think we all feel it is worth the risk if the progress of the dreaded disease can be stopped. On the other hand, it's all trial and error - perhaps your derm is the only honest one! :-(
Have you tried to get a second opinion?

Permalink Reply by MairiM on September 26, 2012 at 7:25am

Wish their was a 'like' button for posts!

Permalink Reply by Lace on November 5, 2012 at 11:49pm

It's odd--I've become both more and less obsessive about my hairline. I'll be blunt; I hate taking off my wig and seeing what a mess my hairline has become. I'm dark, and in addition to the hairloss, I have skin discoloration--white patches, which, before it got too horrid, I was covering up with concealer.

The wig was a great help. With the exception of having to see when I take it off and in the morning when I put the wig back on, I feel like myself again. I was lucky to find a wig that was inexpensive, plausible, and flattering. I'm very upfront about it being a wig; people are surprised.

Even so, it's a bit harder for me socially. I do find I have to push myself more, encounters of any variety are more conscious; more intentional. I'm going to have to get over this part pretty quick; I'm in school to become a counselor! My hope is that all this has made me more compassionate, more empathic, more vulnerable.

I do feel that it has rung a death knell re any romantic life for me. I might feel differently in the future, but right now, I feel that this condition cements the notion that I'll be alone. That hurts. I'm not that old; only 49, and would like at least the possibility, the hope of finding someone, but the odds, sketchy even in the best of times, are really bad now. I'm trying to figure out what all this means--what God/the Fates/Providence has in store for me now.

Hope all this made sense.

Permalink Reply by Debs on November 6, 2012 at 7:25am

Hi Lace, I am in a very similiar situation to you. I am also 49 and am not in a relationship at the moment. I don't know how men will take this condition. I have looked at other sites too in the hope of finding some words of wisdom.. One person has said "people that matter won't mind and people that mind don't matter".. I guess any decent man will not be put off by a medical condition and fall in love with the person! However, back in the real world we do know that guys can be pretty shallow. I think it will also depend on how much we make of it. Heather Mills is an amputee and she married a Beatle, so guys are not all looking for 'perfection'. It is going to be an issue but maybe not as big a one as we single ladies fear. Lace, I decided today that I am going into wigs now. I was planning on doing it in January, but I look at my hair and it is very messy. Look better in a wig. It is a relief to have made the decision.

Yesterday I ordered a book from Amazon by Sandra Dubose, an African-American alopecian, a singer and a beauty queen. She is also a life coach. The book My Crown and Glory is supposed to give you advice on how to deal with alopecia in a positive way. She definatley is a great role model for any lady going through this condition.

Permalink Reply by MairiM on November 6, 2012 at 10:45am

I hope you are a nicer person than Heather Mills :-)
If you can make the wig thing work it will make a difference - whatever we think, people are judged by appearance at first. Once you are close to someone, I'm sure appearance matters much less. I did say before I'd hate having to take a wig off to go to bed.

Permalink Reply by Jules UK on November 6, 2012 at 1:59pm

Hi, and welcome Lace. It's so comforting to be able to share these worries. My mum keeps finding cases of people who have terrible debilitating diseases to try to put my condition into perspective - it doesn't work. I know I'd hate to have MS or something equally desperate, but I've got FFA and some empathy would help more. Nonetheless, we are alone in this and that's hard. I feel that my feminity has been taken. (at the risk of sounding melodramatic, I know!) My husband is sweet and says he'll look after me no matter what, but the fact is that I can disguise it pretty well at the moment. He may feel differently when confronted with Elizabeth I in the mornings...... I think I may move into another bedroom and lock the door to take my wig off when it comes to wearing one. If I'm honest, if it were just a case of putting on a wig and some makeup to face the world, I could (maybe) cope. But can you sleep in a wig? Hope this doesn't sound too maudling. Chin up, I suppose.

Permalink Reply by MairiM on November 6, 2012 at 2:45pm

I certainly concur with everything you've just said.