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: 602
Latest Activity: Nov 25, 2024

Discussion Forum

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by lordiron Nov 25, 2024. 10 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14, 2024. 32 Replies

CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue

Botox and FFA

Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies

Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies

Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue

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Comment by Mandy on April 18, 2014 at 11:59am
I totally agree ladies... Blessed with good health a few aches and pains but I am in my fifties lol... So many friends have fought cancer or have lost family... Helps to put things into prospective!
Love my hair and losing it makes me sad... But I have sooooo many things to be grateful for... Happy Easter xxx
Comment by MJ on April 17, 2014 at 10:47pm
Anne,
I got my diagnosis on the one year anniversary of the Newtown school shooting and I just told myself that everyone of those moms would give every hair on their head to have their little one back!
MJ
Comment by Anne Louise on April 17, 2014 at 10:17pm
I agree. This past Tuesday, when I was supposed to have my eyebrows tattooed, was the one year anniversary of the marathon bombing here in Boston. One family lost their sweet eight year old boy, countless others lost limbs...it definitely put the loss of my eyebrows in perspective.
Comment by Kath UK on April 17, 2014 at 5:13pm

Pam -  I watched the London Marathon on TV and felt humbled by the sheer courage of the disabled runners.  There are certainly worse things than hair loss - upsetting though it is.   I'm particularly aware of this because my daughter has MS (Multiple Sclerosis) and has to cope with that (plus a job and two young children).  When I think about her - and all the other people who live with serious, disabling conditions - it certainly makes me feel I should be able to cope with losing my hair.

(But I still wish I didn't have FFA......).

Comment by Pam on April 17, 2014 at 5:33am

My daughter ran the London Marathon last weekend, and we went up to watch. It really brought tears to my eyes seeing people run who had lost both legs, and arms, and eyesight, and it made me feel sure that if they can overcome such things in life and go on to run a marathon, then I can cope with some hairloss ... Happy Easter everyone!

Comment by Annie on April 16, 2014 at 10:46am

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 on April 16, 2014 at 10:10am
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 on April 15, 2014 at 5:27pm

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 on April 15, 2014 at 5:21pm

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 Celia on April 15, 2014 at 3:24pm

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

 

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