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: 145
Latest Activity: 5 hours ago

Discussion Forum

Could antibiotics be a trigger for FFA?

Started by Anne. Last reply by Anne on Sunday. 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

New Spanish study into FFA

Started by Maggie. Last reply by Maggie Apr 3. 11 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

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 Annie 5 hours ago

I found a headband that I like at Target for $5 .  It's made by Goody, and has a Velcro fastener in the back so it doesn't mess up my hair when I put it on.  It's also tapered in the back, so it doesn't stick out under my short hair. 

Debs, good idea cutting the buff headbands in half.  I've looked at them online, but they're always too wide to look right with my short hair. 

Comment by Debs 6 hours ago
I but buffs and cut them in half, this gives a nice wide headband that covers up our front hairline and is seemless so very soft. They come in loads of colours/patterns. The fabric is quite thin so it looks like a fashion statement not a cover up job.

C, yes do let me know when you will be in Cherstey we can meet for a coffee.
Comment by Liz 22 hours ago

I've been knitting hairbands for myself using a variety of different wools. Now I knit all my headbands using bamboo wool. It's very soft and doesn't irritate the scalp at all. I knit mine with a button fastener at the back. That way I can sew the button at just the right point for a comfortable fit.

xx

Comment by Kath UK 22 hours ago

KarenGinny - I was interested in your use of headbands because I still use them sometimes and have found my fringe (bangs) is now a bit thin.   My hair is quite fine and straight so wearing the band over the fringe doesn't look all that good.  I've been experimenting with a strip cut off an old hairpiece which I've sewed on  to one of my headbands so it acts like a false fringe.  I'm actually quite pleased with the result so now I'm going to try to make a detachable fringe with velcro that I could use with different scarves and headbands.  It may not work but I feel it's worth a try.  (And keeps me busy!).

You wrote that your hair is very curly and you felt that a hairpiece wouldn't work for you but from what I've now seen of the variety of wigs around, I'd guess that you could get a hairpiece to match your hair.  You could perhaps go along to a good shop and ask for advice - I've found that the girls who work at my wig shop are really positive and very helpful.

Like you, I don't know anyone else with FFA so I do sympathise with you.  It can feel very lonely sometimes and this group is such a comfort, I think.

Anne - I'm so sorry about your cancelled appointment after you got yourself hyped up to go for it. That was very disappointing for you.

Comment by C yesterday

This will be OK Anne.  But I / we understand your total disappointment.  Having geared up to have a cancellation is awful.  Fingers crossed for the 30th ! x

Comment by Anne yesterday
Hi ladies, I just wanted to thank you for your encouragement for me on Eyebrow Day. Unfortunately after arranging child care and driving an hour to get there, my appointment was cancelled! I wanted to cry and scream all at the same time. Now I have to wait until the 30th. She apparently left a message yesterday cancelling (she has pneumonia) but I did not get it. Pencils for two more weeks. : (
Comment by KarenGinny - Iowa, US yesterday

Rita, I've tried the plastic headbands but they don't sit right on my head and since I wear glasses, it just gave me a headache. You could also wear the fabric headbands more on top of your head, holding down your bangs if you have them. This doesn't look so good on me since my bangs are rather thin. I pull some of the back of my hair out from under the headband so it sits more smoothly and all you see is the front of it. I can also put my hair in a ponytail and wear the headband across the front for a cooler sporty look. I just heard about a website that sells headbands made from a swimsuit like material that look nice called Bolder bands - bbolder.com - but have not tried them. Look like they would be good for sports or swimming too.

Comment by Rita - Canada yesterday

While in Target the other day, I noticed quite a wide hair band made of plastic and covered with material and wonder whether it would slide back and forth but I am going to pick one up and hopefully it will stay in place and cover the frontal area.  It does not go under the back of head but merely over the top of head to the top of your ears.

Comment by KarenGinny - Iowa, US yesterday

Hello to all, I haven't been on here as much lately, but do still follow along. Anne - I hope your new eyebrows come out well and it helps to boost your confidence. I know I hate looking into the mirror and seeing how bad my hair looks, and always trying to cover it up. I've never met another woman with FFA so I don't really have anyone around who understands. I don't know if my Dermatologist would be able to share that information. April made the comment about her hair being big, curly and wild, and I too have curly hair that would make it hard to match a hairpiece to. I just style it with long bangs and use lots of hair spray, but when outside in wind I usually wear a hat. I also wear stretchy material headbands that I wear under my hair, hiding my hairline and it covers my forehead and temples, with the bangs falling over the front of the headband, and my hair is about shoulder length right now. This helps also when outside or just going in and out of stores, since the wind always wants to pick up my hair and blow it all around. I wonder what else people do to hide their hair loss. Thank goodness I live a fairly casual life style, because the headbands give me kind of a bohemian look, and not very professional. I'm a stay at home mom with two sons so it works for me. I'd love to hear how others cope with this.

Comment by C yesterday

Anne - good luck and a steady hand to the artist ! You will be fine and very glad you had it done.  Pencilling in eyebrows can only work for a short while I think.  I had mine done 17 months ago and need to go for a top up soon I think - I will go after Easter hopefully and maybe catch up with you Deb at the same time.

I do think having the support of others in the same boat is so important.  I know that on this site people come and go, probably having decided they no longer need it.  We have had, as you can see, 145 people who have used this group, but I guess probably only about 30 now communicate and sadly there are more folk joining us.  Not a good thing to have, this FFA !  Hope your day is good. x

 

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