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Comment by Alice on July 11, 2013 at 9:22am

I am also bothered by lot by an itchy, sensative scalp. It sounfs weird but the thing that seems to calm it down best is drinking oolong tea. I read that it helps psoriasis and eczema, so decided to try it. I now drink it daily, hot and iced. For topical relief, I rub in some tea tree oil. Both can be ordered from Amazon at reasonable prices.the Clobetsol was too strong for me.

Comment by PamW San Diego, CA, USA on July 10, 2013 at 5:41pm

I have heard of the interlace system, but not sure if it is an option for me since my scalp is very sensitive and itchy. Not everyone of us experiences scalp discomfort. I think I am more bothered than most.

Comment by Jules UK on July 10, 2013 at 1:18pm

Thanks Debs, I'll look into it. Xx

Comment by Paula uk on July 10, 2013 at 12:42pm

Hi all,
You know ladies,I just don't know how I feel about this " thing" I have . Im just going along with what Dr Fenton recommends, hydroxychloriquine, prednosoline , clobestal foam shampoo, elocon cream and scalp lotion!I think I feel indifferent to the whole thing ...

Comment by Debs on July 10, 2013 at 8:20am

Jules you can buy generic cheaper versions of minoxidil online. I have not used it but I did check it out last year. Regaine is just a brand name, Boots chemist do their own version and so do a few other companies. Xx

Comment by Kath UK on July 10, 2013 at 8:04am

Hi Celia - I can honestly say that I do not wake up every morning and immediately think about FFA.
Of course, I have had several years to get used to gradually losing my hair and I've found that it's something I've now learned to accept.
My daughter - a young mother - has been diagnosed with a far more serious (and potentially crippling) auto-immune condition and is being very positive, pragmatic and brave about it and though she is a constant worry, her diagnosis helped put my problems in perspective for me.
I have decided to get on with my life and if people don't like what they see when they look at me - well they can look the other way!
I enjoy my wigs - they're fun, look good and boost my confidence but I don't feel I am defined by my hair.
I've decided focus on the fact that in many ways I'm blessed.
The bottom line - for me anyway is that I detest having FFA but I refuse to build my life round it.
Sorry to rant a bit. This support group is really good and supportive and my heart goes out to the ladies who are newly diagnosed. It's a tough time for you all, I know.

Comment by Jules UK on July 10, 2013 at 4:57am

Welcome Terry. Glad you've found us! We all support one another.
I'm putting together a list of issues raised in our discussions for the focus group meeting next month, but will run it past you before then for amendments.
Celia, the first thing I do on waking is make sure I pull my hair down over bald bits and try to make my thinning fringe reach over where the eyebrows should be. Can't imagine how my husband feels about the sight he faces each morning.... I'm still not examining my hairline closely; it's a form of denial ( alongside taking meds etc of course) that helps me cope. Going to price Regaine today but it might be too pricey.
Jules x

Comment by Debs on July 10, 2013 at 4:32am

Hello ladies, I sort of come to terms with my altered appearance and then blow me a few weeks later I lose more hair and I have to then try and get my head round that. I don't feel I can really get to grips with FFA until the hair loss stops and I can then get used to my new appearance. The feeling of anticipation mixed with dread can take over your life very easily. I think we have to just make ourselves happy with holidays, social life and nice family events to offset the unpleasant psychological effects of hair loss. Finding ways to normalise your appearance with tattoing eyebrows, eyelash enhancement and supplemental hair does give you a big boost to your self esteem and it does help to lessen the impact of the FFA on a practical level. This is however the single most devasting thing that I have experienced in my life and we must all really look after ourselves and allow ourselves to grieve for what we have lost. (To finish on a positive - my friends say my wigs make me look 10 years younger!!!!) xxxxx

Comment by Celia on July 9, 2013 at 6:28pm

Hello Terry - welcome.
I hope that it is comforting for you to find other people with this prob. I felt the loneliness initially when I was diagnosed - could not believe it !
But then googling and finding Alopecia World, and subsequently setting up this site - I found it very helpful. But what still surprises me................after one year - we have just 76 members in several countries. This is a rare and little understood and difficult disease to treat. As Carol USA said - it's not life-threatening but certainly life changing.
Terry - I hope you have a worthwhile trip to Salford - I don't know where you live, but there are a few of us who travel some distance to see him. My diagnosis was over 18 months ago when I was living in Dubai. I found the page that was taken from the Daily Mail, a UK paper - there was an article about FFA - the new epidemic among women...........from this I heard about Dr Harries who did a PhD in alopecia. Also mentioned in the article was Dr Carol Michaelides who works at the Philip Kingsley salon in London. I went there and found the experience quite hard to deal with. Having been diagnosed by a derm in Dubai - I wanted to find out more. But I got more of the same - no cure - only acceptance.

I think that Dr Harries is our only hope in the UK. Several of us completed a questionnaire recently and the results are still being processed.

I asked a couple of days ago if there are any of you who can wake up and not instantly think of FFA ?

I still am not going to tell anyone here apart from family. I cannot yet come to terms with wig wearing and I applaud those of you who have.
What is the name of the immune suppressant drug ?

What is the recipe for not letting this take over one's life ?
x

Comment by Annie on July 9, 2013 at 3:18pm

Thanks, Pam. I also contacted CARF because there are no doctors in my state listed as treating FFA that are in my insurance network. A representative e-mailed the article for me take to my doctor. I'm not sure I would have gotten the Plaquenil prescription without it. The doctors in my area seem to be very conservative. CARF will also correspond with your current doctor if he/she has any questions regarding your treatment.

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