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Comment by GLMV on January 26, 2020 at 11:13am

 Ive been recently diagnosed although I calculate Ive had FFA for approximately five years. That's when I lost my eyebrows. Looking back at the pictures of my mother I believe she had it too. I'm seeing Dr. Antonella Tosti at the University of Miami. She's a well known alopecia specialist . She put me on plaquenil 200 mg twice a day, avodart .5 mg daily as well as tacrolimus ointment twice a week clobetasol the other days. I'm to use Rogaine 5 percent every morning. Next week I start excimer laser twice a week for 12 weeks. I'm not afraid of the meds and I like the idea of throwing everything at it, while removing meds if and when the condition slows down or stops . If you're going to be in South Florida I would recommend getting an appointment with Dr. Tosti. I found her to be very knowledgeable . I was misdiagnosed by another Derm a few years ago.

Comment by Minter on January 26, 2020 at 7:35am

Hello Halfbaked Who & the rest of the FFA gang!  That is awesome you are writing a novel, you write the best posts, so anything you write I am sure will be great!  It sounds like you are handling your FFA as well as can be expected, which I guess is the same for the rest of us- at least for me that is, I've accepted my fate and now I have to make the best of it.  I keep using my Boost n Blend powder on the top of my head (which works wonders) and a brush on powder on the sides in front of, and now on top of my ears, sigh.  It is now only a matter of time until the day will come when it will all be shaved off and I move on to a wig (have to do it this way as the thought of having something permanently attached would make be go bonkers for sure)  I am incredibly sad about it, but there is nothing that can be done about it.  Actually I was watching 'What's Love Got To Do With It' last night and was all into the wigs Tina and the girls wore, if I could rock a wig like Tina, well life will be pretty good I think! ;-D   Hope everyone is doing well and CurlyK, it will be interesting to hear what happens at CARF, though unless they finally say a hair transplant will definitely work, I am too far gone to bother with anything else!  Halfbaked Who, enjoy sunny warm Florida!

Comment by Elizabeth W on January 20, 2020 at 8:42pm

She has Alopecia Areata.  I found out more about it after I posted the comment.  Unlike FFA, Alopecia Areata does not kill follicles, so it's possible that her hair will grow back.

Comment by GLMV on January 20, 2020 at 2:42pm

She's incredibly brave. Good for her, I hope more women come forward. I don't think her hair loss is from traction alopecia though, it looks more like alopecia areata 

Comment by Elizabeth W on January 20, 2020 at 12:04am

Rep. Ayanna Pressley of Massachusetts revealed her alopecia a few days ago shortly after voting for the articles of impeachment.   She lost all her hair in a matter of a few months. The posted a video on "The  Root: Black News, Politics, Opinion and Culture." Here is the link to the video and an article.   https://theglowup.theroot.com/exclusive-rep-ayanna-pressley-reveals-beautiful-bald-1841039847

I first saw an article on the homepage of my internet provider Wowway.  I am sure that her story and her being such a public figure will give Alopecia lots of publicity.

Comment by Halfbakedwho on January 15, 2020 at 2:24pm

hi, everyone, it's been a long while. I have been in denial-mode which works for me, and very very busy (so much the better). I have lost a lot of hair on the top of my head. This is a good and bad thing for me since my hair has always been so uncontrollable that having less of it on top isn't entirely unflattering - it's flatter and it needed to be flatter anyway. 

What's difficult - my scalp is numb, or practically numb, all the way through to the middle of my head. I think this doesn't bode well for what's coming. It's sometimes sensitive, though I wouldn't say painful - just irritated. Not itchy. And then the numbness is creeping up more and more. 

I am glad that I no longer feel crazy-panic when I describe this, though I'm not looking forward to needing bonded hair (which seems like the best option for me). My eyebrows are thinner too but hanging in there - a bit patchier but they're there... 

When I think back to 2017 when I learned that I had FFA, and how terrifying that was (no sleep, staring at my scalp, crying, staring at everyone else's scalp)... I can say there's been a positive evolution, just not with my hairline. 

I haven't gone back to see any of the specialists in Paris in a long time - about 9 months ago. It's very hard to get an appointment, and my generalist can prescribe me the Clobestol which is the only thing I honestly take when things feel too irritated. The other things they've prescribed for me sit in a drawer and give me dirty looks (ok I still have a touch of paranoia). The Doxycycline, the Finasteride, the Minoxidil - nah. 

Now I'm writing a novel... I am thinking about taking natural hormone replacement somethings... I tried taking prescribed HRT and though my skin felt so soft and lovely my breasts hurt and I was very grouchy and hungry. If you have any ideas I'm all ears (which are covered by carefully placed hair). 

I'll be in Florida again in February at my Dad's fancy house, but you don't have to drive 2 hours to see me CurlyK, though I really enjoyed meeting you. 

So glad you all are here and sorry for being so silent and now so long. Bisous. 

Comment by CurlyK on January 15, 2020 at 1:31pm

Hi there! Today is the last day for early bird registration for the CARF conference in April. After today the registration increases $75. 

Comment by Afraid on January 14, 2020 at 6:48am

Oh hello everyone!  Just having a ‘bad hair’ day and thought I would ‘connect’ with this lovely group.  Wish I could fly over to the CaRF conference it sounds good.  Hopefully some positive news will be shared.  I remember Curly K’s amazing note taking from last year was so helpful to those of us unable to make the trip, 

I continue to read this thread like everyone hoping for some new miracle.  To add to my list of things to try I’m taking iron and vitamin  supplements. Recent hair analysis revealed deficiencies in vitamins d, b3, 6 & 12 (no evidence base for hair analysis I’m told but desperate measures lead to trying/believing anything).    After 2.5 years of hydroxychloroquine I’m thinking of stopping... whilst it’s not stopped hair shedding or alopecia it does seem to have reduced burning and itching (or would that have reduced/ stopped anyway?). The only things I have left to try is laser /photo therapy and PRP.  Worth a go?  Or maybe my thyroid levels need to be tested again and I push for a more in depth test?  my logic tells me to stop...there is no cure... listen to the experts... my heart tells me never give up the hope that I don’t have this silly condition and something so simple one day will make it stop before I turn to hair replacement...  compared to the first year of complete shock, desperation  and grief...the last year or so I’ve tried to embrace what I have  in the knowledge i will feel much worse when I don’t have my own hair.  I constantly reframe, feel grateful for so many other things and chastise  and remind myself it’s only hair and not cancer or another disease but odd days like today I feel sad and worried about the future and anything else it may bring.  

enough wallowing...
onwards and upwards -  sending lots of luck, love and positive vibes to you all xx 

Comment by ohnonotme on January 13, 2020 at 6:13pm

Hi everyone,

Has anyone seen Dr. Lindsey Bordone at Columbia in NYC? My NJ dermatologist referred me to her stating that she is a dermatologist who specializes in hair issues and is doing clinical trials.

Might give her a shot but wanted to hear if anyone had experiences.

Thanks! 

Comment by CurlyK on January 8, 2020 at 9:14pm

Hi everyone. I got this notice today about the CARF conference: 

Don't Miss the Early Bird Registration Cost: $300

Expires Next Week - January 15, 2020 

View the Program-at-a-Glance

The CARF National Conference offers you the unique opportunity to connect with the leading physicians and researchers in the cicatricial alopecia field and meet members of this special community. General and breakout sessions will address the medical and emotional aspects of living with cicatricial alopecia. A detailed conference agenda will be available no later than February 1 on our website.

www.carfintl.org/2020Conference

Wanted to share to make sure everyone was aware of the early bird registration deadline. I'll be there - I can't wait!

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