Frontal Fibrosing Alopecia

Discussion in 'Open Topic (General)' started by soxfans14, Nov 22, 2013.

  1. soxfans14

    soxfans14 New Member

    Does anyone have this? I discovered I have this and am very upset now. All along I have been thinking it was my thyroid. I went through menopause very young at 42. I am almost 50 and a lot of strange things have been happening in the last couple of years. I lost my eyebrows, leg hair, underarm hair and now the front (bangs) of my hair is falling out and receding quite a bit. I am too young for this to be happening. I am reading that there is no cure and nothing will help. I am looking for a doctor now to get some advice.

    Has anyone else experienced this?

  2. albertini

    albertini New Member

    Hi I am 44 and am going through the same thing. I haven't got menopause though, bit I did do IVF (unsuccessfully) and my hair has suffered since. I have lost so much hair you can see my scalp and my bangs are virtually non-existent. I hate to go out and I now wont go to my hairdresser as I am so embarrassed. Go to a dermatologist. Have blood tests, scalp biopsy. You can try spironolactone, propecia or duasteride (sorry if I have spelt any of these wrong). I tried spiro but could not tolerate it. I have now been on propecia for 2 weeks. I am dying to hear anyone else that has been or is on this. Have your iron levels checked (ferritin) and your thyroid.
  3. Sabina

    Sabina New Member

    I have been diagnosed with this by a dermatologist. But really it's just a description and the condition apparently only got a name in the mid '90's. I have been given a three month course of dermovate liquid which I apply topically. I have just been through menopause. The dermatologist said it is an auto immune disease and it is not known what causes it. Apparently it quite often just stops after few years! I am desperate to retain my current hair but am worried it might recede about 15cms back from my face. Then I may as we'll stay in bed with a towell round my head. Does anyone know what the future development of this condition is?
  4. Classical Anne

    Classical Anne New Member

    Dear Soxfans, Albertini, and Sabina -- I hope that by now someone has led you to a confirmed diagnosis of Frontal Fibrosing Alopecia [FFA]. It is one type of Cicatricial (Scarring) Alopecia, which means the hair follicles are permanently damaged. But the better news is that, unlike other types of alopecia, FFA will eventually burn itself out and will not ever recur. And the hairloss is limited to the frontal hairline [bangs] and temples, with some experiencing loss around their ears as well. However, it does not affect the hair on the crown or back of your head. So a well-constructed "topper" hairpiece is all you'll ever need, though some prefer a full wig. And if you're one of the luckier ones, and your hairline only recedes an inch or so [the average is just over 2"], then you can easily get away with silky scarves and wide hairbands, which are becoming very popular now even with those who have a full head of hair. It is important to get a scalp biopsy to determine the FFA diagnosis and begin considering the various options for dealing with the symptoms. And I strongly suggest you look into another patient website: and join the FFA forum discussion. There are some wonderful people there with all kinds of advice, concerns, success stories, etc. Best Wishes! P.S. soxfan, are you in Boston?
  5. Georginajaneb

    Georginajaneb New Member

    Hi Ladies

    So I first noticed my hair loss last June and since then i has lost 80% if my hair, lashes and eyebrows also badly effected. I searched for so long to find answers - not my thyroid, not anaemia, not coeliac...I had a derm tell me twice that it was telogen effluvium. She did a scalp biospy and said "9% of your hair is in telogen, no scarring, no miniaturisation". I later found out that she took these biopsies from the frontal and occipital areas. Not ideal. I went to a trichologist who looked at my hair and scalp microscopically and said "80% of you hair is either miniturized or not growing properly". I was put into spironolactone. I have also recently found out that my DHEAS is elevated, whilst my estrogen is at a menopausal level. Makes sense since i had amenorrhea for years and only this Jan started getting regular periods again (lord knows why). However my estrodiol is still terribly low. My gyno says i may have tube issues or going into premature ovarian failure. We are in the midst of doing further tests to find out.

    Getting to the point, all of this confusion has been surrounding the pattern of my hairloss. For the longest time no doctor has been able to tell me why my temples, sides, hairline and nape have been so badly effected. No one could tell me why my lashes and brows are thinning terribly. Everyone says "your hairline looks normal. Women usually have wispy vellus hairs around the hairline anyway". But looking at photos and seeing the change happen to quickly now i KNOW it's happening and i now have bald spots on my top hairline, the hair around my temples is so thin you can very very easily see my scalp and my nape is kreeping up so quickly that i feel like soon i will look like a bloody monk. My eyebrows seem to be thinning from either end also. My scalp itches and i notice it gets red too. At times my eyelids become tender and i have noticed my bottom eyelids becoming kind of droopy. I look awful.

    I am 22 years old.

    After hours and hours of research and agony, wondering why my AGA doesn't look like AGA, i came across FFA. It all fits, and i cannot breathe. It explains the very gradual hairline recession, the eyebrows and eyelash loss, why there is literally no regrowth on the recession where the hair has been lost. I believe that i have both AGA and FFA. This is common apparently in women who have FFA. I told my dad who is a doctor and he said with much concern "certainly, this is something we must at least rule out". I can tell me seemed convinced too. I now have an appointment to see another derm in 2 weeks, and in the meantime i am slowly dying inside. I am young, and i may just... lose all the hair on my head. It's bad enough that i have been told that i may never have children. I do not notice and white shiny where the recession is but apparently this isn't always noticable. I mostly notice itching especially at my nape and tender eyelids. There appear to be no pimply/lesion things. I really would like opinons. I am almost totally certain that this is what i have as it fits too well. However any input would be appreciated. I shall attach some photos. Please not that i am wearing makeuop so you can't tell what my lashes and brows look like.

    Thank you

    Attached Files:

    Last edited: Jul 4, 2015
  6. Georginajaneb

    Georginajaneb New Member

    I thought maybe as acomparison i should also include some photos from a few years ago. The last one was the beginning of 2014 when i believe my hairline had begun to recede.

    Attached Files:

  7. petey3

    petey3 Member

    I don't know much about FFA. I also have hairloss at the front and nape of my neck but don't have any of the other skin issues or loss of eyebrows. Do you know what triggered the loss? Mine was initially triggered by a change in birth control pills. Have you been to an endocrinologist? I hope you get better answers from the new dermatologist. I know the website has a lot of members and forums with different types of autoimmune type alopecia. Maybe there might be something about FFA on there? At the very least there might be someone with the condition you could ask questions to. I hope you find answers and maybe some positive new. All the best...