Alopecia World
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Day One
This afternoon I was diagnosed with FFA. I have been told that there is nothing they can do to stop or cure it and that I will lose a lot of my hair. I was and still am so confused, angry and distressed that I just don't know what to do or where to go for help. I have spent the last hour reading through some of the comments on here and can see so many comparisons to what has happened to me. The only reason I even realised I was losing my hair was that a scar from childhood that had never been visible before now was . I already suffer from IBS and wonder whether this might have similar triggers, who knows. I also started going through the menopause at quite an early age. I have so many questions some of which you have already answered for me such as can I still colour my hair and does it matter what shampoo i use , I do quite a lot of exercise, will the sweating , which has increased with age, make matters worse?
I just don't know what to do or where to go from here.
Gill Aka Dosierosie
Replies to This Discussion
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Permalink Reply by Kathy on
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Welcome to the forum, Dosirosie!
Sorry to hear about your diagnosis. The first few days are always a bit shocking. I got my diagnosis earlier this year.
I don't think any doctor can say "you'll lose a lot of hair". They don't know. All of us are different in how extensive the loss is. Or how quick. So don't buy into that.
The fact that you have IBS is quite possibly related. Inflammation and autoimmune seem to go hand in hand. I discovered that I had a gluten sensitivity and adult onset asthma - also inflammatory and quite possibly autoimmune. I have found that by changing my diet, taking certain supplements and making sure I get my daily exercise, all of those things have subsided. In fact - a huge benefit to changing my diet was the loss of 26 pounds - which gave me a tremendous amount of energy.
So, the first thing is to look at your health as a whole - not just the FFA. I saw a wonderful Naturopathic doctor who is helping me get everything on track. And should it become necessary I already have the best hair piece/wig maker in all of Los Angeles. (she suffers from alopecia areata and understands exactly what we're all going through).
The support here is terrific - everyone has a story to share! But my first suggestion would be to find a more compassionate and understanding doctor!
Kathy
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Thank you Kathy, Gluten or wheat free diet is something I have been looking into for my IBS so will definately give it a go.
Gill
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Permalink Reply by Linda from Cincy on
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Sorry you were given the news so bluntly, dosirosie, and with such dire predictions. I agree with Kathy that taint' necessarily so that you will lose a lot of hair. Everyone is different, this condition progresses at different rates, and I am still hopeful that some type of effective treatment will be found in the near future.
Your mentioning that you started going through menopause at an early age is interesting. I can't help but believe that hormonal imbalance is behind this condition and have recently met with an integrative medicine doctor to get my hormone levels tested to see what that shows. It hardly seems a coincidence that the majority of us are female and peri or post menopausal. I know some men get it too but the one man I read about who had this condition turned out to be a prostate cancer patient who had been on estrogen treatment for a time. Possibly hormonal imbalances due to age are creating or contributing to the various autoimmune and inflammatory skin, gut and, yes, scalp conditions we're all experiencing.
So the hormonal angle is an area you can possibly explore or, as mentioned there's diet, supplements, prescription meds or a combination of all the above. You have options and there is reason to hope.
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Permalink Reply by Debs on
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Gill the exercise will relieve stress, please carry on. Dont allow FFA to stop you doing anything. I have sent you a private email. Please read it and then get back to me with any questions. The fact sheet I can send you will get you up to speed.
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Permalink Reply by Anne Louise on
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Gilly I am sorry you are going through this. I can relate to the early days of shock, anger and confusion. I was diagnosed in February and started taking Doxycycline and Plaquenil in March. I had lost all of my eyebrows at that point, but my hairline recession has slowed down. I strongly recommend you get a second opinion. The medication options, I was told, have a 50-50 chance of effectiveness. Whether you decide to go that route, of course, is up to you, but you should definitely find a physician who can give you some options rather that tell you it is a hopeless situation.
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Thank you , I will be going to see my own doctor soon so will speak to her about it.
Gillx
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Get yourself a good topper (clip in hairpiece) and start wearing it now so the loss will not be so noticeable as you lose more. That was my biggest mistake that I learned from. I tried "hiding " it with my usual hairstyle for too long. Also, it took me a long time to figure out how to make my brows look OK. Start experimenting with different products now. Anatasia pencil and powder work best for me with a quick swipe of Christi Harris diffuser powder as a finisher.
Good luck, you will adjust. But to be fair, it does take time. Sorry.
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Hello Gilly! Sorry about your diagnosis, it's really tough when you first learn you FFA. You may not lose hair as rapidly as you have been told by your doctor. My FFA started 5 years ago and my hair loss is not that extensive. It goes very slow for me, although can be more rapid for others. Also, not everyone with this disease is menopausal. I am 37 and not in menopause. I am pregnant right now actually :() My doctor was treating a 17 year old boy with this condition. I agree with what others said. Try and get a second opinion as there are treatment options and someone should talk to you about those. This board is full of great information and helps you not feel so alone. Welcome to the group!
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