Comment

Comment by Debs on January 25, 2013 at 11:08am

Celia, I am sorry to hear the bad news about your sister-in-law. The fact that she has a diagnosis and can begin treatment immediately is one positive I guess. I wish your family the very best in the coming months.

Comment by Robyn, Melb. Australia on January 24, 2013 at 9:07pm

Hi ladies,
Thank you for the best wishes on our new granddaughter! I have been reading the discussion with interest and there are certainly a lot of theories about aspects of the condition which I think helps us to maybe recognise aspects of our own particular circumstances. Liz since I was young I have suffered from heyfever and in my 20's asthma(mild). In the last 10 years my asthma has been non-existent and in the last 2 years my heyfever has reduced so much I really don't think I get that anymore - it makes me wonder whether the Planquenil I have been taking for almost 2 years has anything to do with the heyfever disappearing - it could be a co-incidence of course (a positive side-effect from medication for a change would be good though!) I'm not sure about the shampoo theory as I have used all sorts over the years. I agree with others about the economic circumstances dictating whether women follow through with medical treatment - many of us I'm sure hesitated to get advice as we saw it as such a 'small thing' to worry about given other more serious diseases. I certainly felt that way when I saw my specialist, particularly after my GP (female) thought it might have been my hair straightener pulling my hair out....although she did give me a referral to the specialist "just in case I was concerned"! Needless to say I don't see that doctor anymore! I also agree that FFA has probably been around forever, but in generations before us women have accepted this as an older age condition. When I was much younger I do recall seeing ladies with what looked like a receeding hair-line which I suspect was FFA. It sounds to me like we are very resourceful women, particularly when it comes to grooming so it's great to hear what others are doing to minimise the appearance of our 'receeding tresses!' Thank you for all this great information. Robyn

Comment by Liz on January 24, 2013 at 6:20pm

Hi everyone. I took a deep breath and got my haircut today. It's the first time I've had it cut since my hairloss started to show more. A lovely student was cutting my hair who has one more haircut to do before her training is finished. She was very lovely about my hairloss and showed me ways to brush it to hide it better. One thing I found interesting was that she had never heard or been told during her training that there is such a thing as scarring hairloss. She was led to believe that in all forms of alopecia the can grow back. It's a shame that hairdressers who are training now seem unaware of this condition.
x

Comment by Jules UK on January 24, 2013 at 2:05pm

It's been really interesting and thought provoking reading the recent posts. I mentioned the social class theory to hubby and he suggested that higher income means spending more on fancier hair products perhaps. This is what Dr Harries is looking into with his recent questionnaire, shampoos etc. although, in our poorer days, when the kids were young and we had a single income, I always bought supermarket budget hair stuff. This might have been when FFA was brewing. I wonder how far before we notice it's effects, it actually begins?
Celia, I'm so sorry to hear about your sister in law. She has a rough time ahead.
I hope we can arrange a meet up. I'll look into that conference in Durham too. Thanks, Debs.

Comment by Judy on January 24, 2013 at 1:36pm

I thought about that comment also - upper class women having it more often. Actually kept me awake. I was trying to figure out what the difference could be. My only idea was air travel, altitude or toxins? Maybe stress? Just guessing.
I think Karen's idea of lower income not being able to see a dermatologist is probably right. In my case I have Medicare but most of you in USA do not and it would be expensive to see a specialist.

Comment by KarenGinny - Iowa, US on January 24, 2013 at 10:29am

Hi Liz, you mentioned wispy bits of hair at the hairline - I have that. All along where my hairline starts I have a pencil thin strip of hair that is still there and still grows, from in front of my ears, temples to my forehead. I've left it there for the most part because I guess it helps me blend the rest of my hair in to it. Except I started shaving the very front of my hairline since it showed through my bangs that I tried to cover the bald areas with and looked funny. And of course that thin strip of hair keeps growing back, when just behind it is bare scalp that goes back about 1 1/2 inches all around. The rest of my hair is growing as usual except for a thin patch on my back right scalp. My eyebrows and lashes have stayed in good shape. I've also been taking Biotin when I remember but don't know if it's really doing anything. Someone mentioned this being a condition among middle to upper class women, and that may be, but I'll bet there are many lower income to poor women who have it but simply can't afford to see doctors or dermatologists and have it properly diagnosed, or figure it's just part of getting older. I think for men too it's more socially acceptable to be balding, whereas for women, we are supposed to have thick beautiful hair. ??

Comment by Debs on January 24, 2013 at 10:00am

For ladies in the UK
Saturday 12 October 2013, Alopecia Conference in Durham organised by Be Bold Alopecia Awareness, cost is £30.00 inc lunch and evening buffet. I have just booked myself a place. Looks like a great event to get info/support/advice

www.bebold.org.uk

Comment by Debs on January 24, 2013 at 9:57am

Rebecca I agree with you 100%. I really do have a strong gut feeling that FFA is not a rare condition as the medical profession thinks, it is just under reported. My first thoughts were that I was just losing hair because of my age (48 at onset) and I am certain that many other ladies think the same. I also know that going to see a Dr about hair loss is very upsetting and many people most likely put off going. I had a very unsympathetic response from my GP. I didn't know that guys get it but if they do then it would just be written off like you say as androgenetic hairloss.

Comment by Debs on January 24, 2013 at 3:54am

Hi Liz, It would be lovely to meet up, I am in Surrey but can of course drive to meet up with you.

I don't have any medical condtions, apart from FFA! I did start another thread 'other autoimmune related health problems' so I am keeping any watch for any other nasties happening in the future.

I don't have wispy bits at my former hairline. Last night whilst taking off my wig I accidently 'waxed' about half a centimetre of hair off my hairline. I was using wig tape for the 2nd time and I took my wig off, this left the wig tape on my head. I should have used my rubbing alcohol on a piece of cotton wool to remove the tape but I didn't bother and just pulled it off, thereby effectively waxing some of my remaining precious hair. It came out with no pain as it was already about to fall out. I found it quite funny as I am running about like a headless chicken trying to save hair and I go and wax myself! XXXXX

Comment by Liz on January 24, 2013 at 3:49am

I wonder if men do get it but dont think of it as anything other than going bald?

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