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: Jul 14

Discussion Forum

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14. 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

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

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Comment by Willhod3 on July 1, 2019 at 5:24am

Hi

Ive been doing a lot of reading regarding the use of titanium dioxide in sunscreens. To my horror I’ve just learned it is used extensively in supplements and I’ve been taking those since I was a very young man. Read what the American College of Healthcare Sciences has to say about Titanium Dioxide. Of particular note, it states “ It (TD) has also been implicated in immune system function, with some studies showing DNA damage by TD nanoparticles” We really need to read the small print, it’s not just about what we put on our bodies, I.e. sunscreen, but what we are putting in also. I’m now looking for TD free supplements and sunscreen.

william

Comment by illustr8r on June 30, 2019 at 9:34pm

@Minter I’ve embraced the baby bangs too with my pixie. I hate how my ears stick out (my bob covered them nicely!) but this haircut looks intentional and I get compliments on it ... which makes me be extra exuberant in my “thank you!” ...if only they knew the agony that’s lurking on my scalp!

Comment by Lu on June 30, 2019 at 8:14pm

Hi 2Dachshunds,

Yes Zinc is different to titanium dioxide & the only sunscreen I’ve been recommended to use. Not only is zinc a better sunscreen as it absorbs more UVA & UVB than titanium but titanium is a toxic heavy metal which creates free radicals that do oxidative damage to your body and skin cells, whereas zinc is a critical mineral nutrient that your body needs. 

Comment by 2Dachshunds on June 30, 2019 at 3:33pm

Wow, thanks for the article Bloomingdalekid and everyone for talking about this.  I had stopped SPF quite awhile ago along with other chemical ingredient filled products.  I understood the safe sunscreen to use was the zinc oxide kind, I guess that is different than titanium oxide?  

I have had less itching and now that it is super hot, and I sweat a lot and seems like itching is becoming bad again.

I'm using the Moo Goo shampoo and conditioner and think those help. Ive tried Beauty Bar face cleanser and lotion but did not think the lotion was moisturizing enough.

The article is very hopeful, I am excited!!!

Comment by Minter on June 30, 2019 at 8:41am

Lu, lots of good info!

Just double checked my moo goo shampoo/conditioners no titanium dioxide in it- I was 98% certain there wasn't!  I almost always wear a hat when I'm going to be outside for sometime so no sunscreen goes on my forehead anyway so I guess I'm ok there.  Though to be honest if it came down to wearing sunscreen or not, with or without titanium dioxide I will opt to wear it!   

AnnieMay, I hear you with the huge shiny white forehead, I HATE it!  I use Neat Feat 3B Face Saver (amazon) or Bare Minerals Primer (or sometimes both)! along and Rimmel matte face powder and the two of them seem to do the trick to cut down on the shininess - not much I can do about the bright whiteness though except use a little blush/contour powder and hope that it all looks somewhat natural. Good luck at the wedding and I am sure you will look beautiful!   

Plf, I also now have a pixie cut with "baby bangs" swept across the forehead so it looks like my hair is supposed to be this way, I love it- much easier then trying to pull my bangs down or trying to hairspray it all into place, I wish I went with baby bangs years ago!

Comment by Lu on June 30, 2019 at 6:06am

Hi Pam, he didn’t recommend anything in particular but his in-house salon sells the Keratase range. I told him I was using stuff with no parabens or sulfates but he said the big thing to avoid is titanium dioxide (which is what is in sunscreen). Didn’t talk about makeup (cos I don’t wear it often). As for moisturisers, again avoid anything with sunscreen in it or if it has sunscreen just avoid putting it higher than your eyebrows (or where they would be if you have them ... I do not). 

Plf, I haven’t noticed any adverse side effects. He’s also got me taking a mix of viramins & amines. Not sure if it’s the vitamins or the meds but my eyelashes are definitely thicker & longer. 

Comment by Plf on June 30, 2019 at 12:58am

Hi everyone, also a while since I have posted ..living in the land of denial, sounds like some small wins..but not 'the cure', Lu can you tell me if you have had any side effects from the medications?  I'm good to hear re the reduction in hair loss.  Annie may hope your weddings are a huge celebration and lots of fun, hope you have found an amazing outfit to wear.  I am now sticking with a pixie cut, no more bobs, which just highlighted my lack of hair at the front.  Thanks Toby for the current research, will definitely pass info onto my daughter , like me has always worn a moisturizer with SPF in it..harsh Aussie climate.  Good luck to all and thanks for the ongoing discussion

Comment by PamW San Diego, CA, USA on June 29, 2019 at 11:56pm

Which shampoos did he recommend?  Also how about make up and moisturizer?

Comment by Lu on June 29, 2019 at 11:53pm

Hi Toby & all,

One of the lead doctors for that research, Prof Sinclair, is my dermatologist. He’s told me to cut sunscreen & to make sure my shampoo / conditioner has no titanium dioxide in it. He’s put me on a dutasteride/minoxidil/spironolactone mix which I’ve been taking for the past 6 months. Haven’t noticed any hair regrowth yet but there is a substantially less hair loss..... & they’ll consider doing a hair transplant after 1 year of treatment. 

Good luck all. 

Comment by AnnieMay on June 29, 2019 at 10:17pm

I’m still here too! I’ve been focusing on trying to look my best with two weddings this summer both in windy places. It’s hard enough being 62 and grappling with aging skin (which is much worse with FFA) but dealing with a HUGE shiny white forehead is humiliating and beyond exhausting. The second of the two weddings is next week and I should be excited about it but part of me is dreading it. 

 

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