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: 584
Latest Activity: on Tuesday

Discussion Forum

Plaquenil ( hydroxychloroquine) and covid 19 symptoms

Started by Liz Lov. Last reply by Taylor on Tuesday. 4 Replies

Hi all,As hydroxychloroquine ( Plaquenil) is a hot topic right now and is being discussed as a possible treatment for Covid 19, I would be interested in whether anyone here who actually takes Plaquenil has had symptoms of Covid 19?I was once offered…Continue

Tags: covid19, hydroxychloroquine, ffa, plaquenil

New Here - just given diagnosis

Started by La. Last reply by Desei Jul 28. 7 Replies

Hi everyoneI have just joined because it has been confirmed I have FFA. I have very little eyebrows left, no hair on my arms or the fronts of my legs, hairline has moved back and the hair in front and above my ears have gone. It's so…Continue

Has anyone had any luck going on the Autoimmune Paleo Diet?

Started by CarolJ. Last reply by JakeHodges1985 Jul 24. 14 Replies

Since I was told this is an autoimmune disorder, I was thinking about trying this diet to try and help reset my immune system. Has anyone ever tried this? Any luck?Continue

Outer Ear Cartilage Pain

Started by Madmasoo. Last reply by JakeHodges1985 Jun 17. 16 Replies

It's been awhile!Update on my status from being diagnosed 4 years ago - the hairloss continues, now starting in the front hairline and more of my eyebrows.  I am off of all Rx as nothing was really working.  Just a side note if at all related…Continue

Tags: menopause, early, FFA, pain, Ear

Comment Wall

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Comment by Elizabeth W on July 20, 2020 at 4:19pm

How many of you attended the Hair Necessities virtual CARF conference on Saturday?  What were your impressions of the conference?

Comment by CurlyK on June 25, 2020 at 6:01pm

CARF is holding a VIRTUAL half-day conference for all those with scarring alopecia. The date is Saturday, July 18 from 11am-3:30 eastern time in the US. There is a fee of $99 to attend (early bird fee good through June 30) but this supports the technology cost to put the conference on (CARF is a non-profit dedicated to supporting all of us with scarring alopecia). You can find more information and register on their website: http://www.carfintl.org/virtual-conference/

Comment by CurlyK on June 25, 2020 at 5:57pm

Comment by CurlyK on May 11, 2020 at 8:50pm

Hi friends! Sharing a free CARF webinar with you that will be on Facebook live and on YouTube tomorrow (Tuesday) night with Dr. Maryanne Senna on the Mind & Body Connection with Scarring Alopecia. If you've been anxious or stressed with all that is going on in the world right now, tune in to this great resource with me! 

https://youtu.be/otBteQzX_4Y

Comment by BubbaLu on April 7, 2020 at 6:31pm

My hair has never stabilized, it itches, but the hairline is not yet too far gone.  I attribute some of the control of my hairline to hydrochloriquine.  Three weeks ago I went to the pharmacy and I was told they were “out”.  COVID19 patients are using it to fight the virus.    Maybe that is more important than my hair, but it doesn’t make me very happy!  Has anyone else run into this?

Comment by illustr8r on April 7, 2020 at 2:42pm

I guess I’m stressed. I have 3 red pimples in my hair line. Just when I thought my hair had stabilized. This makes me very upset. I guess if I’m in lockdown no one can see me go bald!

Comment by Minter on April 1, 2020 at 7:54am

Hello to AnnieMay & everybody!  It is crazy times for sure now and I hope you and your loved ones are staying safe and healthy.  I was just thinking the other day of what will happen with the salons closed, to people like us and our 'problem hair' I know it is not really a priority in the great scheme of things at the moment-  but now that so many have closed down in the USA and other countries what can be done for those that have bonded hair or intralace systems etc... they need to be maintained or it can become pretty uncomfortable pretty fast and it is not really something that can be taken care of at home by yourself.  Anyway, again, Stay safe! Stay Healthy!  

Comment by AnnieMay on March 29, 2020 at 10:59pm

Hello all, I wanted to check in and say that I'm thinking about everyone during these very unsettling times and hope that you and your families are well. With our kids coming home from NY and the stress of all this I've definitely had more hair loss and thinning and it's a challenge but nothing like what so many are dealing with. Thinking about everyone tonight

 

Comment by CurlyK on March 18, 2020 at 10:59am

My apologies - the webinar is TOMORROW night, Thursday, March 19. 

Comment by CurlyK on March 18, 2020 at 8:10am

CARF conference has been postponed until November. However, tonight at 6pm eastern time US, Dr Maryanne Senna will do a Facebook live talk on scarring alopecia and COVID-19. Find CARF (Cicatricial Alopecia Research Foundation) on Facebook to watch. It will also be recorded. Who else will be watching with me?

 

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