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: 599
Latest Activity: Jul 25

Discussion Forum

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by LauraLGiraldo Jul 25. 2 Replies

Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by DragonandFox Jul 22. 11 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

Hair Toppers

Started by Leni. Last reply by Lang Bozic May 22. 10 Replies

I am interested in getting a topper but don't know where to go for one. Having one of those weeks when the hair keeps falling and I am not feeling very comfortable. I don't want to spend a lot of money. Thinking of ordering off the internet. Please…Continue

Get Ahead of Hairloss Event plus new information on FFA

Started by Liz. Last reply by Carol Aug 7, 2025. 11 Replies

Hi I don't post on here much so I may well be giving information which you might have been discussing already. Are any of you in the UK going to the Get Ahead of Hairloss event in London at the end of September? It has been organised by Dr Wong who…Continue

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Comment by jess on August 14, 2014 at 9:15am

Liz, what hairpiece are you using?  Is it one like Pam's?  I have still not found something yet.  I am in Kentucky....

Comment by Marian on August 13, 2014 at 10:07am
Thanks Rita! I will call when I get back to town this week. I am also interested in the stick on ones that a couple of the UK ladies had made, I have a whole lot of loss in temple area as well as bang. Sounds like I'll be wearing a wig quilt with all the bits but can't stomach the full wig alternative. Does anyone know where these "side burns"can be found? Still trying all the meds but need a back up plan.
Ps I hate wind!
Comment by Rita - Canada on August 12, 2014 at 7:10pm

Marian, I live in Ontario & purchased the hairpiece from Rochetti's. It has 4 clips on top of head. She cut it according to my length & a little bangs into it. Mine is titled 'EasiPartHd' (heat difiant clip in crown volumizer)  on the box it has a website with a toll free # in Canada and can perhaps guide you to a place near you.  www.easihair.com   Hope this helps.

Comment by Marian on August 12, 2014 at 5:35pm
Rita-what kind of hairpiece did you get and where did you purchase it from? I am in Western Canada.
Comment by CJ on August 12, 2014 at 4:10pm
Thanks for replying all it is good to hear others stories and treatments etc.
Comment by Rita - Canada on August 12, 2014 at 3:10pm
Yes Liz very happy with the hairpiece. I had purchased a full wig a couple of yrs ago and although pricey, don't care for it as too much hair( from 1 extreme to another).
Comment by Liz on August 12, 2014 at 3:02pm

Hi Rita. It's great to hear that you are happy with the hairpiece you bought. It does make a lot of difference doesn't it :o)

C I am currently seeing Dr Wong at Hommerton hospital in north London. She attends the CARF meetings and I heard about her from Debs. My Gp referred me to Dr Wong and Dr Wong is happy to see me once or twice a year.

xx

Comment by Classical Anne in NC mountains on August 12, 2014 at 2:06pm

I still am taking absolutely nothing for the hair loss, except for the scalp injections which I still swear by.  I have more 'female pattern baldness' now, i.e. thinning on the top, but truly have not lost more than a few hairs from receding hairline recently.  It had receded about 3/4 inch before I got the diagnosis and started the injections, a little over a year ago.  Since then it has receded an additional 1/2 inch or so at the temples, in the first few months.  It has progressed less than that frontally, I rarely have any redness, and almost no itching at all anymore.  I hope that gives hope to some of our new ladies.

Comment by Rita - Canada on August 12, 2014 at 1:41pm

oh I forgot to mention I have an appt to have my eyebrows tattooed. Yikes am concerned as it is so permanent at least until touch up needed.

Comment by Rita - Canada on August 12, 2014 at 1:36pm

I stopped all meds & even the Clobetasol for scalp.  However, I am prepared to start the Doxycycline 100mg again if I see intense shedding. It is a terrible condition but thanks to Liz & her sharing of the piece she uses, I knew what to look for &  have purchased & often wear the hairpiece. It gives me confidence & I have no worries in the wind. 

 

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