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3 FFA cases in one family
I come from a family where there are 3 FFA cases: 2 female (myself included) and 1 male.
I was diagnosed in 2013, at age 42, though I had had some loss of eyebrows since I was 40.
This year, in February, my mother was also diagnosed, at 82 years old. My uncle, his brother, has sadly passed away in 2014, and was never officially diagnosed, but given his hair loss pattern and total loss of eyebrows, there is no doubt in my mind that he was an FFA sufferer himself – I always knew him like that, so he developed the condition at least 40 years before me.
The fact that my mother (who lives with me) has developed FFA after me and at such a different age from mine, leaves me quite curious…
Is there anyone else here with more than one case of FFA in their family? If so, can you share whether the development of the condition was almost simultaneous in their situation?
Replies to This Discussion
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Permalink Reply by Liz on
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Hi Isobel. I have FFA which I was diagnosed 4 years ago at the age of 40. My mum has FFA. She was diagnosed after me but probably had it a few years before me. So my mum would have been about 65 when hers started. It wad mentioned to me that the condition might be caused by the contraceptive pill and that the men diagnosed with it might have had some hormone therapy of some sort. Are you in the UK?
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Permalink Reply by Isabel on
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Hi Liz,
No I'm not in the UK. Living in the UK would make solutions Like Lucinda Ellery's more accessible for me. For now, I can still hide my hair loss, but would be nice to have a better solution at hand (there's no such service around here)
I live in Portugal, though I did participate in dr. Christo's study at Guy's Hospital, London, last march.
I've been thinking about causes for FFA a lot - I think we're clearly genetically predisposed to developing it and that in any of my family's cases the triggering factor was, in my opinion, emotional. -
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Permalink Reply by Maz on
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Hi Isabel,
My daughter and I have it. I am 67 and my daughter is 38. I have yet to be diagnosed but it's very obvious that I have FFA. My eyebrows gradually disappeared over years. They were very thin by the time I was 60 and completely gone by the time I was 64. I got them tattooed when I was about 56. The hair loss has also been gradual and I didn't realize the extent of the problem until about a year ago. I guess I've had my head in the sand. On the other hand, my daughter had a more sudden loss and lost her eyebrows virtually overnight. She also shed hair at a greater rate than me so noticed when no-one else could. Naturally, she has been much more concerned about it than I have, has had it diagnosed and is on medication for it. I am planning on talking to my doctor about having a biopsy or going on medication to slow this loss down before it gets to the stage where I can't hide it.
Oh, timing. Funny thing is my greatest loss coincided with my daughter's. However, we live in different states so it has to be a coincidence
My aunt, who died last year at the age of 91 certainly had FFA plus very thin hair and my mother, at 90, has very thin hair but not FFA. I've noticed that my younger sister (at 50) has thin hair on top of her head. She did lose a lot of hair about 5 years ago so I asked her if she was still losing hair. She said no, everything is fine, so I hesitate to say anything more.
I was just saying so what, I'll live with it, but I've decided it may well be worth it to slow it down while I can still cover it with my own hair. Of course, I don't like windy days, or anyone touching my hair, and I have to be careful when I push my hair back behind my ears. I have to do that by grabbing the long hair below my ears and moving it, not running my fingers over the top of my ears. Sort of little things but it occupies more of my thoughts than I would like it to.
Good luck to all of us. I wish there were some easy answers but I'm afraid there aren't .
Maz
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Hi Maz,
I think that the fact that your major shedding occurred at the same time as your daughter was developing the condition is no coincidence. It could be one more evidence that emotional factors are involved.
I'm pretty sure my mother suffered greatly with my diagnosis and the emotional distress it provoked in me, and that may have triggered her own onset. This is why I try and keep as calm and cool as possible, though sometimes, as you all know, that can be very, very hard.
Let's keep giving each other strenghth and stay positive! -
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Hi Isabel,
I wish that was the answer but I'm just not an emotional person. Not that I haven't had a lot, a real lot, of traumatic events in the last 30 years. I had to learn to live each day as it came and put the past away. I am able to do that and I live happily with stresses that would cause most people major difficulties. That has also meant that when I discovered that I was losing my hair I shrugged my shoulders. It really is a minor thing in the scale of problems in my life.
However, my daughter may have suffered extra stresses with her two little children and a major car accident. Hard to say because she also has auto-immune issues.
What I am sure of is that there is a genetic predisposition, at the very least, if not a recessive gene for it.
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Permalink Reply by Tania on
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Sorry for the intromission, but I only had taken contraceptive pill for 6 months in my all life, I don't think contraceptive pill is related to FFA :|
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You may well be right Tania but I wouldn't rule it out completely. If you have a predisposition to FFA even taking the pill for 6 months might be a trigger. Let's hope they find out what causes it soon :)
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Permalink Reply by Montymom on
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My sister and I both have FFA. She's 40 and I am 46. We were diagnosed about the same time, but that was mostly due to the fact that when her dermatologist noticed hers, she mentioned that I had symptoms too, and he suggested I get a biopsy as well. I have my own dermatologist and was diagnosed separately by her. We are not living in the same household but it seems to have onset about the same time at age 40. We have slightly different symptoms – she has more receding and I have more eyebrow loss and bald patches over my ears. We both tend to have sensitive skin. The whole thing is such a mystery!
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My mum lost hers a lot slower than mine. It was almost like mine was in a race to catch up. My mum lost her eyebrows quickly and they are completely gone. Mine seem to have stuck around for longer. I have 1 and a half eyebrows. I have sensitive skin and bad hayfever
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I also have sensitive skin and hayfever. Curiously, ever since my FFA diagnosis, for some reason, my hayfever has practically disappeared.
Liz, in your and your mother's case what do you think was responsible for triggering the condition? -
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Montymom, do you have any suspicions regarding what triggered the condition in yours and your sister's cases?
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