Comment

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.

Comment by Jules UK on November 23, 2012 at 5:56am

Has there been any evidence about the flu vaccine having an effect on FFA at all? Just wondered, since it's been mentioned a couple of times.

Comment by Jules UK on November 23, 2012 at 5:54am

Hi all. I've been thinking along the same lines about giving FFA a higher profile - perhaps writing to Good Housekeeping magazine (my mum subscribes). They run alot of articles about breast cancer - well this is also a female disease so should be pertinent to their audience. I've switched to Dermovate but the redness is not lessening and my hairline is very ragged. It really is horrible. I'm going to meditation classes but am finding it impossible to switch off the "monkey mind". Not sleeping much either. Has anyone else tried any relaxation techniques that have worked for them? It's only been about 5 weeks since diagnosis but feels like a lifetime. It's so reassuring to see all your comments, especially how devastated you feel since friends and family really can't see how frightening it is. Only last night, an old friend commented that she'd rather go grey than bald, "oops, sorry Jules!". I ask you........ Celia, when you swim, do you wear a swimming cap?

Comment by Liz on November 23, 2012 at 5:47am

Hi celia. Thanks for the advice. I shall look in to getting a refferal to Dr Harries. I'm planning on going to my local Alopecia meeting in a couple of weeks so may meet someone else with the condition. Enjoy your gym session :o)
x

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