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Permalink Reply by DeniseC on November 2, 2016 at 5:20am

Oh dear! What a sad post. But I bet most, if not all, of the people who read/post to this forum have had at least a taste of what you feel. I know I did. For months and months I would lie in bed, feeling my hair and praying I was imagining its disappearance. It was a very isolating feeling - I didn't feel I could talk to anyone at all, and was ashamed. Why, I am now not sure, but I certainly did not want to admit to anyone that I was going bald.

I had been mightily put off consulting my GP as he had told me (erroneously) that my eyebrows falling out was due to age - I was 59 or 60 at the time. Eventually, I had to tell someone - my sister, with me in tears - and then my partner and daughter, again with floods of tears on my part. They were, predictably, nothing but concerned that I was so very upset, and full of support. So from that, I plucked up the courage to do something about it. I was told from the outset that there was nothing that could be done, as the hair follicles are killed off, and therefore hair could not grow again. Not sure now if that is true, but the outcome was that I abandoned trying to find a chemical response, and started looking at more natural things that might stop the loss from continuing. I was/am also fundamentally adverse to taking drugs as I have long suspected chemicals of contributing to auto-immune conditions, of which FFA is, I believe one. (We have lots of AI conditions in our family - I have lichen planus, as well as FFA.)

That was two years ago, and I don't seem to have any more loss - although this condition is so very insidious there could be - or there could be tomorrow, or the next day. One thing I have learned to accept. Or more or less accept - if I am honest, I know I would be depressed if I noticed any significant loss.

Actually talking about the hair loss, but within the terms of 'I have an auto-immune condition and it causes alopecia', rather than acting upset, certainly has helped me come to terms with this horrible thing. I also did something practical and had an Intralace System fitted, which has changed my life. Dramatic, but true! Clearly I would much rather not have to have it, but it has allowed me to forget, for the most part, that I have lost my hair. No one knows, unless I choose to tell them - and I have surprised myself by being prepared to do just that.

Last week I met with someone from this forum, who happens to live relatively close to me. She had been considering an Intralace and had posted about negative reviews, so I responded, and ended up suggesting meeting so she could see. It was really good to meet someone else who knows exactly what it feels like, and to compare experiences. As you wrote, this is a condition that leaves you feeling alone, but meeting someone else makes you realise, you aren't. So why not join a support group if you can find one? Or use this forum to try to create one? It might feel like a monumental effort right now, as you are so down, but I truly believe it would be worthwhile. It would help you, even in a very small way, to take some control back, which is so very important.

Support is so crucial. Support lets you move forward and not get stuck in an isolated negative bubble.

You aren't alone - there are many, many people with this condition, all of us wondering 'why me?' and feeling, at least some of the time, very, very down and anxious about it all.

Keep posting - I know this is not the same as actual physical support, but it does help. At least, it has helped me. And try to find someone who lives near you.

xxxxx

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Permalink Reply by Anne Louise on November 2, 2016 at 11:15am

Hi mc.

I just turned 49 and have had FFA for about 4 years now. This is such a frustrating disease. I go through phases where I try to ignore it and others where I'm up late at night researching possible causes or cures. I am in the Boston area too and actually have a coworker that also has FFA. She recommended a woman who tattooed my eyebrows and it was the best thing I ever did. Let me know if you want her contact info. I still miss my once thick dark eyebrows and cringe with sadness when I look at old pictures. Keeping a positive outlook and good self esteem is a daily struggle for me.

I went to the support group in Boston a few times, it was ok. If you ever want to meet up in person I would be happy to do so. I have been pretty open about my FFA with trusted friends and family, and they are supportive but they don't get it. They see me and say I look great. I tend to focus on my former appearance and the future...will I need a wig/topper of some sort? Of course, true peace comes when we focus on the present, right??!! On my better days I focus on the blessings in my life, which are many.

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