Comment

Comment by Anabela on November 26, 2012 at 6:28pm

Hello Celia.
There is one thing I would like to know and that no derrmatologista replied today:
- "What is the duration of the disease, from the beginning to the end of the fall"?
Thanks for the sympathy and kindness.

Comment by Anabela on November 26, 2012 at 5:55pm

Hello Liz, good night.
My hair is now a little thinner, but I do not feel crisp. Do you feel inflammation of the scalp, followed by a slight scaling and fall? I never had inflammation or scaling but dropped me in it. Are you taking hydroxychloroquine? I'm also in premenopausal women.

Comment by Anabela on November 26, 2012 at 5:37pm

Judy, good night from Portugal. Thanks for your words. When I take hydroxychloroquine, slows the fall. The same happens when I'm calm and relaxed. When I get stressed and depressed, the hair falls again. I take vitamins every day for hair, to keep strong to cover the flaws of the head. I wash the hair with a mild shampoo for frequent use.

Comment by Anabela on November 26, 2012 at 4:34pm

Celia, thank you for your support. All good words we hear when we suffer from this disease, act as a salve and give us encouragement.

Comment by Liz on November 25, 2012 at 7:10am

Hi Anabela. I was diagnosed with FFA in September of this year so Im still getting used to it(although I fear that I never will).
Can I ask everyone. Is your remaining hair different in texture than it once was? The hair that is left on the front and top of my head is thinner and a bit frizzy.

Comment by Judy on November 24, 2012 at 6:12pm

Anabela, Good Afternoon from the US
I am glad you have the support of your husband. I have also had FAA for years but just diagnosed recently. It is "a hard pill to swallow" (extremely upsetting)! I also am taking the hydroxchoroquine - has it helped with your hair loss?

Comment by Anabela on November 24, 2012 at 9:46am

Hello to all, good afternoon.
I have FFA since 2008 and only discovered in 2010. When the dermatologist told me what had, I cried a lot and was very angry ... Why me? Right now, I am at a stage of acceptance (never can accept 100%).
Started by falling eyebrows 3 months after the death of my Father. I have made hydroxychloroquine twice and the main side effects I felt were the level of vision and weight loss (despite continuing with a normal diet and balanced).
Right now, I take vitamins and apply on the scalp minoxidil. In Portugal, except hydroxychloroquine, all medication is very expensive.
I try to live "one day at a time" and not think too much on the disease. Of course there are days when I look in the mirror and I don't like what I see ... But I have the unconditional support of my husband, which helps me a lot.
Byebye and good weekend!

Comment by MairiM on November 23, 2012 at 3:27pm

NHS website says the following - so others may be able to ask for vaccine. Having said that, I had the pneumonia vaccine last year.

We provide pneumonia vaccines for all those over 65 routinely and for those under 65 that have any of the following long term conditions:
Asthma and other chronic respiratory diseases
Diabetes Mellitis
Chronic heart disease
Chronic kidney disease
Liver disease
Neurological disease (eg stroke / TIA)
Immunosuppressed
Living in residential or nursing home

Comment by Debs on November 23, 2012 at 11:27am

Hi everyone, I am going to an alopecia uk support group on 3rd Dec. I need to be with people that have hair loss. Liz, I hope you find your support group meeting helpful. I can't keep going on about it to friends because they don't understand. I sometimes feel like I am going to crack up and am using exercise at the gym to try and relax a bit bit it is on my mind constantly. Celia thanks so much for keeping us all in the picture about Dr Harries. When I hear how you get on I will see about may be getting to see him or at least trying to get the same drugs as he prescribes for you. I hope you ladies have a good weekend. Xxx

Comment by Liz on November 23, 2012 at 7:18am

Maybe Dr Harries would like to see me and my mum as we both have it. So it's a rare condition ( I have it), even rarer in pre menopausal women ( I'm pre-menopausal) and not hereditry (my mum has it...Maybe I should feel 'Special' lol :o)
I wonder if there is a link between FFA and the hormones that are pumped in to animal products. Im a vegararian but I drink a lot of milk and I've read some awful stuff about the hormones in milk.

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