Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 171
Latest Activity: 4 hours ago

Discussion Forum

Wearing hairpieces/wigs

Started by Debs. Last reply by Debs 4 hours ago. 57 Replies

Hello LadiesIn January I cut my hair short, it is naturally curly, this enabled me to just fluff it up a bit and it covered y receeding hairline quite nicely. I have lost about 1 inch at the front hairline and 1.5 inches at my temples. I have grown…Continue

What type of hair overage do you use?

Started by Sad in chicago. Last reply by Sad in chicago on Thursday. 12 Replies

I have what you might call a wig let that I use and work with on a daily basis. It clips in. Looks great. But don't want to wear it to work out, walk the dog, hang at pool. What options do others use for activities?Also stopped using any drugs!…Continue

Wondering if there could be a connection: FFA, Bowens disease, Sarcoidosis, Endometriosis & (pre surgery malignant ) Thyroid Nodule...

Started by KayDeeW. Last reply by KayDeeW Aug 25. 2 Replies

I joined this group for digital support, as I don't want to continue to wears wigs. If not before, I can't do it next summer - 2015. I've been in denial ..When friends suggested Rogaine & other options - NOTHING. Bought a new wig. I thought my…Continue

Tags: endometriosis, thyroid, bowens, sarcoidosis, FFA

For ladies not using any medication - drug free management of FFA

Started by Debs. Last reply by Debs Aug 20. 30 Replies

This discussion is for ladies that have stopped using medication or have decided not to use medication.I used drugs for one year. Now using holistic strategies of anti inflammatory diet (see Dr Andrew Weil's website) and supplements; turmeric,…Continue

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Comment by Debs on August 27, 2014 at 5:07am
Pam those are excellent ideas. Like you I personally would not want to go public with my FFA but if there is any lady in the UK that would go on embarrassing bodies it would be terrific.
Comment by Pam on August 26, 2014 at 3:43am

Jules - Another suggestion for publicity  for FFA is the Womens Institute Magazine, WI Life.

Also something on TV would be great as well. Not sure if I want to go on Embarrassing Bodies though!!!

 

 

 

Comment by Debs on August 25, 2014 at 6:05am
Hi Jules, I suspect there a lots of women with FFA that are left out of our discussions and probably don't even have a diagnosis because they are not computer literate and therefore are not accessing information. How on earth the survey can reach them in this day and age I don't know.... certainly the idea of using radio is very sensible, I think the NHS should be more proactive. GPs know who is diagnosed with alopecia and could send out the questionnaire. I am sure their admin staff could do that without it adding to their workload too much, God knows they don't have a cure for us so we should deserve some assistance. NHS doctors are doing research so surely NHS GPs can co-operate and pass info on to Alopecians. Thanks for all the time and effort you are putting into this. Much appreciated.
Comment by Jules UK on August 25, 2014 at 5:17am
Thanks, Norfolk Girl too!!
Comment by Jules UK on August 25, 2014 at 5:16am
Thanks so much, Terry, for your suggestions. It'll be useful to have as many suggestions as possible to put to the meeting tomorrow.
Also, I really identify with your observations about windy days! I can't stress enough just how transformative myhairpieces have been to my confidence. I feel more relaxed and honestly forget I'm wearing them. They particularly suit my pattern of hairloss but I'm sure Rob could accommodate any problem areas. I think Pam posted his details, in Cheltenham. X
Comment by terry on August 25, 2014 at 4:39am

Hi Jules, many thanks for your hard work and info. have just looked at Alopecia Uk online and subscribed, which only took minutes, to take part in the survey that you mentioned.

I think your idea of advertising the survey is a great idea, I think it would be a good idea to contact a wide range of magazines as this problem affects such a wide age range...and as some magazines have a long lead in for articles probably sooner rather than later. As well as Radio programmes such as radio 4, perhaps worth contacting local radio stations , local newspapers and the Daily mail have been pretty good at covering articles on female hairloss.

Would it be an idea to contact the manufacturers/PR guys at Regaine to see if they would be willing to help out?

Please let me know if I can be of any help........am based near Manchester.

Comment by terry on August 25, 2014 at 4:26am

Many thanks Celia for your helpful and positive comments, very much appreciated. I must admit am beginning to feel so much better now that am off the medication, they were pretty hard drugs to stomach and I tend to agree that I don't think they were of much benefit to me personally, the hairline has noticeably receded but like so many of the ladies on here have adjusted to having FFA, as you say it is not an illness, and following a much healthier regime am just trying to get on with it. Must admit I feel more aware of it on those 'windy' days .....but guess that's where hats, buffs scarves etc come in useful.

Lol......a sense of humour helps a lot...again many thanks.

Many thanks too to Debs, the info and helpful tips and suggestions have been of such great value and your positivity is such an inspiration........much appreciated.

Comment by Norfolk Girl on August 25, 2014 at 3:32am
If Women's Hour would do something on FFA that would be brilliant and would reach people who perhaps had FFA but didn't realise it.
Comment by Jules UK on August 24, 2014 at 2:08pm
Also, I saw a new (to me) dr last week. Dr Kaur at Solihull. Dr Harries recommended her as someone closer to home. She says I've lost 5cm each side above the ears and 2 cm from the front. The front is thinning but she suggested it may not go completely but stay thin. Anyone else had similar? Thinning but not losing?
Still on Plaquenil and Regaine.
X
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?
 

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