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Frontal Fibrosing Alopecia
Information
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 14 Likes
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 0 Likes
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
Trying a new approach with CBD oil...
Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies 0 Likes
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 4 Likes
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
Comment Wall
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Comment by Liz on December 18, 2016 at 2:47pm
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Hi. My mum has FFA and she no longer loses any hair. I think that she's probably had it for 8-10 years. She's never taken any medication for it. I have had FFA for 5 years . I lost a lot of hair in a short space of time but now it seems to have stopped. In the past couple of years, since losing a band of hair at the front it's gradually thinned on the top. The hair on my arms also started to thin and grow in a zig zag fashion when I was first diagnosed. Recently I'm getting more normal growth on my arms
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Comment by Airam-FFA on December 18, 2016 at 1:48pm
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Yes. I would also be interested in success stories - would give us hope. xOx
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I have made a request for a FFA success group to hopefully collect the timelines and treatments of people success per Judy's great idea below. If you know someone who is no longer on the site as they have experienced burnout, would you please ask them to post. I for one need to read more about this aspect and hope I others will embrace. I think it will reduce stress.
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Judy, thank you for the response. Would you be willing to share your timeline and treatment?
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Celia and Kathy, First, Celia, thanks for starting this group. I was on it from the beginning and amwas so grateful for it!!
Kathy, I believe you are correct. In my case the FFA
happily, did burn out several years ago and I gradually stopped following this site. There probably should be a site for 'FFA Success and Burnout'. In my case, I just stopped loosing hair. Occasionally I see a few new 'weak' little hairs on hairline, arms, etc but they soon disappear. I am
OK with it now but certainly was a wreck when it was active. Wishing all of you the best of luck with it.
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http://www.lucindaellery-hairloss.co.uk/ffa.php
Just looked on the Internet - they are in various locations.
xOx
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Hi Kathy, I have recently been diagnosed with FFA after two years of my Dr saying it was female pattern baldness - will always wonder if my hairline might have been saved had they referred me to a specialist earlier. I have been given a very thick ? Steroid cream (difficult to put on - I think it rubs out my hair so am not using it) and Doxycycline - malarial tablets - not sure about these as they make me sick and I have to sit upright for an hour to stop them burning my throat :/ . I am trying to get referred to a specialist for a second opinion. I have also started a course of acupuncture with Chinese herbs with a view to de-stressing. I have given my DNA as part of a research programme. I was also told the condition should burn itself out 2 - 4 - 10 years ... :( But how much of my hairline will remain! It is a crappy condition! xOx
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Hi. I had my first long awaited doctor's appointment this week at CU Med Center in Denver. The doctor told me while rare she is seeing more FFA with time. I knew I had it from "way too much time" on the internet but my first doctor keep saying it was non classic patter of female baldness...good grief! Any, I have been feeling "pretty dark about the whole thing based on what I have been reading. My new doctor on the other hand has said she has had really good results with the protocol I am on...plaquenil, tacrolimus ointment. I am also having a lot of acupuncture and have upped my yoga practice. She also said it will burn out eventually. I do not seem to find much supporting info along these lines on the internet and I guess keep asking variations of the same question on this site. I am wondering if maybe the success stories are not here as possibly those people are not researching in the way we are any more. Does any one have any perspective in this regard?
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Claire Julia, good luck at Lucinda Ellery's- please post how the day goes, I for one will be interested, as I am starting to think that by the spring it will be time for me to do the same.
Ana_Brazil, that is good news for you! Glad to hear your program is showing some improvement :-)
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Sorry, that should have been thanks to Denice, not Debbie.x
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