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: 146
Latest Activity: 8 hours ago

Discussion Forum

New Spanish study into FFA

Started by Maggie. Last reply by Suzanne Capella 10 hours ago. 13 Replies

I am new to this site so hope that this post works - apologies to all if it goes wrong.A bit of background on me first - I have recently been diagnosed with FFA, but have suffered from it for at least 3 years, although I didn't realise it. Initially…Continue

Could antibiotics be a trigger for FFA?

Started by Anne. Last reply by Anne Apr 13. 28 Replies

I thought I would start a post dedicated to tracking antibiotic use prior to FFA diagnosis. I reviewed recent comments and counted up ten of us that have been on several rounds of antibiotics prior to our FFA diagnosis! I suspect there are more. By…Continue

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

Started by Debs. Last reply by Anne Apr 4. 23 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

Regimens

Started by Sam. Last reply by dee Mar 29. 25 Replies

Hi Everyone, I know in these various discussion threads many of us have commented on what hair loss we have, what medications we are trying, what diet we are doing, etc. I thought it would be helpful to start a discussion where we have everything we…Continue

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Comment by Jen 8 hours ago

The information provided is really helpful to me. I am very grateful. It is important that I find a solution so that I can move forward confidently without having to worry about the wind or any other adverse condition. The steroid injections do not help and I am afraid of any medication.  I hope that others on this site find this useful.  Thanks to both you and Pam. 

Comment by Jules UK 9 hours ago

Well, Pam keeps hers on all the time in between hair appts, so about 6 weeks.  Sounds wonderful!  I hope she doesn't mind me talking about her like this! :)

Comment by Jen 10 hours ago

Thank you Jules,

Wonderful feed back.  I suppose you can shower with them for a few days.

Comment by Jules UK 10 hours ago

Hi Jen, the hairpieces I've ordered are fixed with wig tape but it's similar to a wound dressing apparently, allowing the skin to breathe so the hairpiece can stay in place for prolonged periods.

Comment by Jen 10 hours ago

Liz,

I just checked the Trendco site and saw Vesta. Is this the one you use?  It looks like it would do the job.  I will see if I can get something like that here. thanks so much.

Comment by Jen 11 hours ago

Hi MJ, It is a relief that I do not suffer from the symptoms but at the same time I cannot tell when I need to see the doctor.

Liz, Are the clips hard on your hairline?   Does your piece look like bangs or some other types. I live in Canada and will go to the hairpiece shops here. I purchased some fake bangs at the mall but they did not match so I believe that I need something better.

Comment by MJ yesterday
Jen, inam like you as I have no symptoms either. I am very thankful for that, however it is impossible for me to tell if I am active or not. I was wondering how the front hair pieces work foe someone with fine hair...seems like clips would be hard to hide.
MJ
Comment by Liz yesterday

Jen. I have a hair piece which I bought from Trendco for about £50. It clips in and covers where my hair has gone. I love it! I can forget I have it in. It blends in with my hair. My son said to his friend last week 'Look at my mums new wig' and his friend said 'what wig'. It does exactly what I need it to do. x

Comment by Jen yesterday

Hi Jules,

Thank you for your reply.  Would I be presumptuous to ask if you can post pictures of the 2 hairpieces before you attach them? I am thinking that pictures after you attach them is too much to ask.  It would be a really good thing if we can figure out a solution to the hairline so we can feel normal again.  For now, I may just need to work on the edges with small hairpieces and clever hairstyling. I am not ready for a wig.

 

My FFA has absolutely no symptoms. No itch or pain or inflammation. I just lose the hair in the shower.  Sometimes  I may see 4 or so baby hairs on my desk which look like the ones on my hairline. 

Comment by Jules UK yesterday
Jen, I've ordered 2 hairpieces just as you describe. They're from Pam's hairdresser in Cheltenham but they're not ready yet. They should be OK to leave in situ and survive washing, drying, swimming etc.... That's the plan anyway. I'll let you know.
Re the posts about how to tell when FFA is active, I find that the "doll's head hair" appears plus some mild itching or that "crawling" sensation occurr. I have it at the moment and my front hairline has receded by about a cm in places. Looking a bit chewed! Hey ho!
 

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