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 Plf on April 5, 2018 at 8:56am

Bad day today, have resisted medications prior to daughter's wedding, notice I have lost another cm from font of hair line and eyebrows scant and red and swollen...yes life is good and there are a lot of worse conditions ..but has anyone found a product that helps reduce the eyebrow irritation and redness?  Thanks again, 

Comment by Minter on April 3, 2018 at 7:51am

@Anonymous, I try to use hypoallergenic also as my skin is happier with no extra "stuff" in the products- but neither of these hair powders irritate me, so I have no problem using them because they do what they are meant to do- hide my hair loss :-)

Comment by Anonymous on April 2, 2018 at 8:05am

I am still looking into the study at the U of MN. It is for a topical cream called gabapentin. Doe anyone who has participated in a study have any feedback for this cream? The possible side effects without any benefit are concerning. I guess that's why it's a research study.

Comment by Anonymous on April 2, 2018 at 8:00am

Minter, Thank you for the info. on your beauty products. I will investigate. I have tried to eliminate any products that have fragrance, use only hypoallergenic, etc. But, this last year I have digressed, because the old products work the best with my hair. So frustrating.  

Comment by Minter on April 1, 2018 at 8:01am

*** edit to add to my comment, just wandered over to google to take yet another look for my hair powder and they now ship to the USA! Yay! if anyone is interested, it is revolutionbeauty.com  

Comment by Minter on April 1, 2018 at 7:56am

@Mel, haha that is ok ;=D I've done triple comments here because I thought it wasn't going through! :-/

@illustr8r, I saw that article- she looks great! Eyebrows make such a difference, never realized how much until I got my own done-

@Anonymous, this is my almost daily- unless I know I am going to stay home and not see a soul all day except the faces on the tv ;-) hair routine:

I use a powder I got in the UK for just in front of my ears it is called Revolution Root Cover Up I haven't been able to find it in the US- yet! But it does seem to last forever and it was cheap, so it is a bummer I can't find it here- sigh.  I am now starting to search around for an alternative (I think I will give the Clairol powder root cover up a try next, I have a coupon)!- I like the Revolution Root cover up because it seems to "stick" to my skin and stay there, I do not want a powder that will slide or drip down the side of my face if I go to the gym or get sweaty or wet or rub it or whatever and this stays where it is supposed to and I get really sweaty, I mean drippy sweaty at the gym so I know it works! So I use that in front of my ears, it has it's own little brush and I apply it in front of my ears and blend it all in, I use the dark brown. I also have my hair cut into longish sideburns on the side so I can pull it forward and disguise the loss even more, then I use a bit of hairspray or Got to Be Glued paste or a mix of both to keep the sides in place.  I use Boost n Blend powder on the top of my head at my part, I sprinkle a bit of powder, blend it in quickly and a spritz of hairspray and it will also stay all day- I don't use it on my sides as it is more expensive so I want to save it for the top of my head! eh, makes sense to me anyway ;-) My hair is strawberry blonde and I get my roots done in a darkish brown, doing that makes my hair Not look so translucent and helps to hide the thinning, you would think it would be the opposite, but it seems to work for me- Anyway, it sounds like my "morning hair routine" takes a lot of time after writing it all down, but really it takes no time at all, seriously, no time and when the wind blows I don't have to worry about my sides anymore, well not as much!  

Comment by illustr8r on April 1, 2018 at 1:39am

I don’t know if Helen Mirren has FFA or not-but she got her eyebrows microbladed. Just thought I’d share for those who are deciding whether to do it or not. :)

http://www.dailymail.co.uk/tvshowbiz/article-5564549/Helen-Mirren-7...

Comment by pauliegirl on April 1, 2018 at 12:14am

@Jules Australia and others talking about diet: I just wanted to share about my first visit with a functional med doctor this week. It was really interesting! He is all about the leaky gut and getting it back to a healthy, functional state. While he had not heard of FFA , I have a confirmed autoimmune disease (scleroderma) to definitely have reason to go at this to heal. I think many of us would agree that FFA is autoimmune and it could therefore be healed (halted) as well with the AIP. 

The timing of the appt was interesting because I had waited on this appt for a couple of months, and in the meantime already started myself on the AIP diet (autoimmune protocol) because of what I had learned independently. AIP—No fun a lot of the time, that’s for sure! But it is do-able with learning about recipes and various food options along with a strong mindset that if we fix this gut, we’re in business! So for your hubby, Jules, and for we with autoimmune, I would say we have a viable option here. Doctor has advised a plethora of supplements to help heal the gut. He ordered a slew of labs so we can see where things are at and also measure progress. 

This doctor has been doing this for decades and he said that 20 years ago most people thought they (believers in leaky gut) were crazy talking about the it. It is finally gaining in recognition as a real thing with scholarly articles and research to back it up, not to mention success stories for many individuals. 

What makes sense to me is that we have increases and decreases in inflammation/loss of hair. We try to correlate these ups and downs with medications, but through this blog and in various journals we see that some seem to have a positive result and others don’t with various treatment.  Could it be that what we are really having happen is a decrease in inflammation or hair loss (or the opposite) because of eating /drinking inflammatory food/drunk AND/OR stress? (Cortisol is a big leaky gut offender). Food (no pun intended haha) for thought! 

Comment by Jess on March 31, 2018 at 11:09pm

@Pauliegirl. Yes, I thought titanium was safe as well, along with zinc. I was a little confused by the findings. I have also been looking for a safe sunscreen. I think EWG rates titanium oxide as fairly safe, like a 3. Maybe I will stick just zinc based ones?

Comment by pauliegirl on March 31, 2018 at 10:36pm

@Jess...fascinating article! Thank you! Ugh I thought titanium dioxide was safe but I think there are two types. I will get in touch with my herbalist to get her thoughts. I do believe zinc oxide is safe.

@Lynn555 when are you leaving? If you go to the EWG website you can look at their safe-rated sunscreens. Also, believe it or not, some essential oils provide some sun protection. I need to do some reading about which ones but that might be google-worry. Your fair and I understand you want to be very careful! 

 

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