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Comment by Kandy15 on January 8, 2020 at 3:52pm

Hello everyone,

I haven't posted anything in a while but I do come here to read comments and, I guess, see if someone has found a miracle cure.  

Last February I went to see a lady to talk about bonded hair and what all it entails so I could be prepared for it when the time comes to go that route.   She owns a salon called Alternative Hair Replacement in Alabama.  She looked at my hair loss and confessed that she has never heard of LPP or FAA.  She told me that she thought there was a scalp treatment that could help me keep my hair looking good for the next several years before I had to think about bonded hair. It is called Capilia and was invented by a team of trichologists.  Since then I go once a month to her salon and have a treatment for a deep scalp cleanse done.  I use the Capilia shampoos, conditioners,vitamins and growth serums as well.  Although this has not totally stopped the hair loss at my forehead, it has made the hair follicles that are not infected with the disease stronger and fuller.  I like to think that the progression has slowed, but it hasn't stopped it.  I'm not sure anything will.

The owner actually does the bonded hair for the men and women who come into her salon and I have a regular young gal that does my treatment once a month.  She is sweet and adorable and she absolutely LOVES wigs,  There is nothing wrong with her bio hair but she almost always wears a cute wig of some sort.  She says she has 5 of them and switches them out from day to day.  She told me that it's so easy to just pull her own hair back and pop on a wig.  I have to ask her each time I go if it's her hair or a wig because I sure can't tell.  I hope that I can have that same great attitude about wearing hair when the time comes for me to have to do so.  I'm trying really hard to save my hair and get to acceptance of what I have waiting for me in the future.  

I still have many sad and blue days about losing my hair and worry about what is coming.  But at least I'm not crying like I used to.  My job and my family keep me busy and are supportive so I just take one day at a time.

Hugs to all of you! 

Comment by GLMV on January 5, 2020 at 9:08pm

 I guess doing a transplant makes sense depending on your disposable income. If 10,000 AUD is what you make in a week then I say it makes some sense. If that's your income for a month then I don't know? Jeffrey Epstein, our local transplant specialist has a study where he claims most people are very satisfied, but of course what would he say, he makes 7 thousand US dollars for each eyebrow transplant .

Comment by GLMV on January 5, 2020 at 9:04pm

From what I've read hair transplants do well initially if your FFA is somewhat inactive but the long term results are variable with the majority of recipients loosing most of the transplanted hair after four years. There was a case of a woman whose transplant was very successful but it was attributed to the fact she was receiving chemo for breast cancer . Chemo is immune suppressive so that's logical

Comment by Minter on January 5, 2020 at 6:50am

Hi Lu, 

TBH, I don't think I would unless it was 100% proved that it would work and that it would stay working!  I couldn't imagine going through that pain, along with the hope that this is what will give me my hair back and then in 5 years it is back to square one :-( 

Comment by Minter on January 5, 2020 at 6:48am

GLMV,  hello and I also inherited it from my mother-  she was diagnosed with all sorts of different things along the way and is still convinced it is a form of lupus causing her hair loss.  I also went to a couple different doctors before I was 'officially' diagnosed and that I think was partly from me going in and saying I think I have FFA!   Since being diagnosed 3, well now 4 years ago, I see sooooo many women when I am out grocery shopping or just out in the world that appear to also have FFA, especially much older women- chances are they have never been officially diagnosed and just go with the thought that it is old age hair loss I guess.  Just a side note, I am not taking any meds for this, especially having seen my mother use topical and oral (prescribed) treatments and nothing has worked.  

Comment by Lu on January 3, 2020 at 7:44am

Hi All, 

My dermatologist has been mentioning the possibility of a hair transplant to give me something other than bare skin at my temples. It’s such a new procedure for us that they can’t guess what the long term result will be. I’ve just found this article though that I wanted to share : “Hair transplant in frontal fibrosing alopecia: a multicenter review of 51 patients”, Vano-Galvan et al (https://www.jaad.org/article/S0190-9622(19)30800-X/fulltext)

So knowing it’d be about $10K (AUD) to do the temporal area & only a 41% graft survival at 5 years, would you do it?

Happy new year everyone & here’s to wishing for a miracle cure this year. 

Comment by GLMV on December 31, 2019 at 5:39pm

Ive been recently diagnosed as well and just joined the forum. I'm reading about a lot of members stopping botox and various skin products. Well I inherited FFA from my mother . She passed away two years ago at 90. Her FFA stabilized without treatment since she never was officially diagnosed, I know she had it because of her loss of frontal hair and complete loss of eyebrows was how  exactly how I presented. She never had botox or used sunscreen in her life. Her only makeup was eyeliner and of course brow pencil . She also used an old fashioned face powder made from rice flour . I have a feeling, and I may be wrong, that the reason there is an epidemic of FFA is basically ' recognition' . Once an illness is recognized there's always an increase in diagnosis . I actually saw two dermatologist for different skin issues and neither recognized my FFA . I finally diagnosed it and went to an Alopecia Derm specialist . Now I'm praying that mine stabilizes as well, although I am going to get treatment.

Comment by Wyobalance on December 22, 2019 at 10:57pm

I've attended 3 prior CARF conferences, and they were well worth the time and cost.  I'm looking forward to Nashville!  I'll also be co-presenting on Tips & Tricks. I highly recommend attending.  Guaranteed, you will not be disappointed.  

Comment by CurlyK on December 22, 2019 at 3:39pm

Hi! I just wanted to remind everyone that the bi-annual Cicatricial Alopecia Research Foundation (CARF) patient/doctor conference is coming to Nashville, Tennessee in April 2020. I'm part of the conference planning committee and I can tell you this will be the best one yet! In addition to hearing from world-renowned hair loss experts/physicians, we are adding in sessions on dealing with our disease emotionally and physically (morning yoga, anyone?). We also have some neat surprises planned too. 

Give yourself a gift this Christmas and register for the early bird pricing by January 15. You'll receive two and a half days of information, practical tips, and best of all, have the chance to meet others who struggle with the same issues and make some life-long friendships. 

You are worth it, beautiful one! 

http://www.carfintl.org/news-and-resources/patient-conferences/

Comment by Afraid on December 15, 2019 at 2:24am

Thank you @illustr8r

im delighted to hear your hair has stabilised, that’s wonderful news.  My ears would not allow for a pixie style lol! 

I read an article about vitamin c relating to skin and whilst I haven’t taken supplements in the past I hoped it might be useful with this condition.  I can forward details if you would like to read the article.   I know what you mean about age and effort required.  I am 52 and feel robbed of normal ageing process (which would be bad enough..haha!).  I’ve tried CACI facials.. again as a preventative measure... I’m hoping these will also help.  

here’s to more good days!! X 

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