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Comment by Jules UK on August 24, 2014 at 2:05pm

Hi all
There's a meeting of the steering group on Tuesday to finalise the survey on alopecia questions which goes live early Sept. I don't know whether any UK ladies have checked out the alopeciaUK online site, but there's a countdown clock alongside further info about the whole research issue. I really hope our UK members will take part!! We need to represent FFA! The survey is open to all hairloss sufferers, whatever the cause, so our voices need to be heard...... I'm disappointed that it's aimed only at UK but that's all that funding would support.
We're also looking for suggestions as to places to publicise the survey - any suggestions? I thought of writing to magazines; Good Hpusekeeping ran a feature on hairloss a couple of months ago. Or radio programmes like Radip 4 Inside Health. Any ideas?

Comment by Celia on August 20, 2014 at 4:43pm

Terry - I stopped taking medication months ago.  Had no faith in it and wasn't convinced that the derm had faith in it either.  My FFA seems to be progressing slowly.  I use dermovate (clobetasol) twice a day.  The inflammation comes and goes.  I eat healthily, don't drink alcohol and take Superdrug Hair Skin and Nails tabs as well as turmeric, evening primrose oil, calcium, vit D and B vits daily.  I didn't like the effects of hydroxyl or doxy and actually feel better in myself without them and also taking meds made me feel like an ill person, if that makes any sense.  I'm not ill, just unfortunately developed FFA, for whatever reason.  I have read about this new wonder drug that seems to home in on A Areata as a variant that seems to benefit from it.  I hope it really does help many people, but I'm not sure how FFA can be helped by taking it.  I'm an active person, I gym , swim, cycle etc and just live in hope that one day The Cure will be found.

Comment by Anne Louise on August 19, 2014 at 9:41am

Debs thanks for the tip that is good to know. Swimming is by far my favorite activity and this FFA makes that rather challenging. Right now when my hair is wet and slicked back my hairline still looks pretty normal. This weekend I am doing a sprint triathlon to celebrate my 5 year cancerversary and am grateful I won't have to worry about hair issues! It's always the future that puts me in worry mode, but honestly the future is always uncertain for all of us, so I try not to dwell on it.

And Anne I would love to meet when you are up here!

Comment by Pam on August 19, 2014 at 9:35am

I wondered whether anyone else saw the article in yestredays Daily Mail about the new drug that has been used successfully to cure alopecia? Its called ruxolitinib. Any comments? Is this a potential possibility, or just a false hope?

http://www.dailymail.co.uk/health/article-2727233/Pill-cure-baldnes...

Comment by Debs on August 19, 2014 at 2:17am

Anne Louise I just pop on a buff at the beach and still go swimming etc. With FFA our frontal hair loss means we can always use wide headbands and buffs for the beach or gym, it is a small blessing I know but I have just got back from holiday and wore headbands/buffs every day, I did not bother taking my wig away with me. Glad to hear you are enjoying rhe beach and having fun.

Comment by Classical Anne in NC mountains on August 18, 2014 at 11:27pm

Anne Louise, how beautifully you put it!  So very glad you're enjoying your summer.  I'll be heading up to Boston on Halloween.

Comment by Anne Louise on August 18, 2014 at 10:59pm

April congratulations on your pregnancy! I believe it was you who were hesitant to get pregnant because of FFA. Now you have something joyful to focus on!

I was away at the beach last week and spent many hours riding the waves. I kept thinking I might as well enjoy this summer because I will probably be self conscious next summer with less of a hairline! Last summer I was penciling in my eyebrows and didn't get my head wet, but with the tattoos I was maintenance free! So who knows what the future will bring. I find I am more joyful when I focus on the blessings of the present moment.

Comment by April on August 16, 2014 at 10:19pm

Thanks Linda!

Comment by Linda from Cincy on August 16, 2014 at 8:14pm

Congrats, April, on your pregnancy, your skin changes already demonstrate how hormones affect our skin . . . and our hair.  Your skin problems definitely sound like rosacea even though you weren't officially diagnosed.

I agree with Alice that while you're expecting you should steer clear of any attempts to affect your hormonal levels.   That's why women of childbearing ages are told to stay away from Propecia and Avodart.  Mother Nature will probably provide you with all the good hormones you need in coming months.  Take care.

Comment by April on August 16, 2014 at 8:12pm

Alice, yes I wouldn't try that now! There isn't much I can do for the FFA right now. Just hoping it doesn't get too much worse

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