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: 600
Latest Activity: Jul 8, 2023

Discussion Forum

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

Man with FFA. New member.

Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies

Hello,Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.I first…Continue

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply

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

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Comment by illustr8r on July 9, 2019 at 1:49am

OK, has anyone developed red rashes anywhere around your eyes? I thought I was getting a stye-it’s not. I have a 2 inch long red rashly stripe above my eyelid, another small spot on upper and lower lid. Itches, stings and it’s flakey. It happened almost overnight. No idea why. It’s not a scratch.

I read this, “f this condition persists, the eyelids can become thickened in a process called lichenification.”

Another lichen-something?!? Ugh.

Comment by illustr8r on July 8, 2019 at 11:16pm

@Minter Almost all the ladies I know 50 years old(er) are working out a lot and pondering whether to go on Lipotor!

Comment by Donna on July 8, 2019 at 10:38pm

I’ve just found out through investigation that tramadol has titanium dioxide .  I’ve been taking that for several years.  Probably as long as I’ve had FFA.  I guess that needs to stop also. Sounds like there’s a correlation there.

Comment by Elizabeth W on July 8, 2019 at 3:55pm

Which sunscreen ingredients are safe?  It looks like we have to choose between FFA's hair loss if we use must sunscreens or makeups with SPF or getting skin cancer if we don't protect our skin.(I know we can wear wide brimmed hats for protection.)

Comment by Minter on July 8, 2019 at 8:36am

menopause can cause higher cholesterol as well?  ughhhhhh.  Though I will say now that I finally am on low dose HRT that my hot flashes are more or less under control and I am kicking myself for not going on it years ago because of the fear of breast cancer/heart disease (which apparently unless you have a history or higher risk is not caused by HRT, big thanks to the medical community for instilling that unfounded fear in me and many other women).  Because of that  I was a miserable, sweaty sad mess until I decided no more, I can't take living like this anymore and decided to use HRT. 

Comment by illustr8r on July 7, 2019 at 10:26pm

I used foundation for years that had spf 15 or higher in it. Protects the skin? I think because of FFA my skin is blotchy with brown spots, red spots and broken capillaries. That sunscreen didn’t protect me from anything! I had melasma on my cheeks and chin too a few short years back before the hair loss-and I think this was a signal that my hormones were out of whack-an equally big trigger for FFA as the products we use. It’s all a big mess and depressing when you expect to roll through menopause with some hot flashes and higher cholesterol like 9 out of 10 women I know. So, yay.

Comment by Lu on July 3, 2019 at 8:54am

Donna, zinc is fine to use. It’s a mineral your body actually needs. TD is not ok. It’s a rare earth metal that can be toxic & carcinogenic. If you can’t avoid TD sunscreen my derm told me to not apply it higher up my forehead than my eyebrows... keep it away from your hairline. 

Comment by Willhod3 on July 3, 2019 at 8:18am

Hi Ladies

For more info on TD go to YouTube, literally loads of videos on the subject, much of which is all rather alarming, and not a little depressing. Still knowledge is power and anything that can go some way to relieving this hideous disease must, surely be welcomed.

William

Comment by Toby on July 3, 2019 at 8:00am

I did the same thing. I eliminated oxybenzone and avabenzone in sunscreen and replaced it with titanium dioxide and zinc oxide sunscreen. I rarely wear sunscreen now. I did not wear foundation for a year and had nice hair regrowth. My hair finally looked fuller instead of flat. Then I started wearing tinted moisturizer without harmful ingredients daily. One day while washing my hair I had 20 hairs fall out and my hair once again looks thin and flat with bald spots. Now I look at the ingredients in the tinted moisturizer and it contains titanium dioxide.

Comment by Afraid on July 3, 2019 at 2:10am

I am so confused!!! Titanium dioxide is cancerous but yet it’s in my HRT and my sunscreen .., I red France have tried to ban as a food additive.  

On a different note I have checked my body temperature and it is around 35 degrees!!?  Does any else have low body temp?  Could this be link to hair loss?

apologies I don’t know how to copy link into this thread re CACI facials but if you google it will provide info 

 

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