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Comment by MairiM on November 12, 2012 at 4:29pm

Celia - it is a closed group on Facebook. If you click on the little lock beside the name of the group you will see it says 'only members can see the group, who's in it, and what members post' I think the only difficulty we are having is finding each other on FB. Who'd have believed there were so many Heidi Shorts in the world :-)

Comment by Heidi Short UK on November 12, 2012 at 3:26pm

Hi Jules, we have all been there, I know when I first found out I cried all weekend, I cried at work, at home , with my family, alone in my bedroom I felt so helpless. Until you have tried every possible thing you can do, like the best dermatologist, the best shampoo, the best diet etc and you are confident that there is no unturned stone you haven't tried, then you get some peace. I know now that I'm not going to wake up one morning with my hair left on my pillow or that when I have a bath all my hair is notall going to go down the plug hole in one big swoop! I haven't got that feeling of complete doom any more, I know that I am doing what I can, it is still receeding slowly but life still goes on and if the worse thing happens then yes I will get a replacement, but at the moment I can hide it. I've just been away to Newquay for a cheap and cheerful weekend away with my husband and 6 other couples. We drank too much, we eat too much and we laughed for 3 days and not once did i worry about my hair, they wouldn't have cared if I was bald or if I was wearing a full wig, they liked me for me. Some of them know about my problem but half of them didn't know and it really didn't matter. You will feel better soon, I know you don't think so now but you will. I send you a big hug! Where are you as i live in Somerset.

Comment by PamW San Diego, CA, USA on November 12, 2012 at 12:30pm

Don't cry Jules. I cried a lot too and I do think the stress makes things worse. I just know that I am doing everything that I can to fight the disease. Taking meds, using clobestasol and I have even decided on a gluten free diet, which is recommended for people with auto-immune diseases. I have eliminated wheat and artificial sweetners from my diet. Don't know if it has helped because you don't know what it would be like if you didn't take all the meds, etc.

I am going to do the best I can with my hair until I need to wear a wig and then I am going to plop the best one I can find on my head and get on with life. Think about this - if you spent the day today crying and sad with your hair, then you have lost a whole day of enjoyment.

I think about all the days I spent worrying or fretting over something and the next day I found out I had this disease, which was far worse than anything I worried or fretted over. You don't know what tomorrow is going to bring so take the good days you have and enjoy them. Get out and take your mind off of it. Go do something nice for yourself and remember the people who love you, love you for much more than your hair. We are all here for you.

Comment by Jules UK on November 12, 2012 at 12:05pm

Hi. I've just found this comment wall. Doh! I'm thinking along the same lines as Debs about trying to throw everything possible at this as early as possible. I'm really panicking at the moment as my hairline is getting pretty thin at the fringe now as well as losing a couple of inches each side. I've just had an appt come through to see Dr Harries, on 20 Dec. I know Celia is seeing him before then so it'll be interesting to see what she thinks of him. Feeling very low though, crying alot, which achieves nothing of course. Anyone had any counselling? I'm trying a meditation class which is great while I'm there but not so easy to try it with so much going through my mind at home. How quickly has hair gone from the front for anyone else?

Comment by PamW San Diego, CA, USA on November 12, 2012 at 12:02pm

I have been taking the generic for Plaquenil. I was given a baseline retina exam - just in case. The eye doctor said that eye damage was very rare, and in fact, if I did have problems, the problem would correct if you stopped the drug. He also said it was very rare. In any event, Plaquenil takes approx 3 months to get into your blood stream. I have been taking the drug since the beginning of August. I don't know if it is working. I am interested in knowing if your contact who has had the disease since 2006 has had any relief?

Comment by Liz on November 12, 2012 at 10:02am

I was offered the anti malarials first but I didnt want them becuse the forst thing the doctor said was that can cause eye damage. He then told me that this was rare but I have problems with my eyes and so for me it wasnt worth the risk.

Comment by Debs on November 12, 2012 at 9:39am

Anti-malarials.... I have been in contact with a lovely lady on the Alopecia UK website who was diagnosed with FFA in 2006. She sent me an informative email detailing all the treatments she has tried. She stressed the importance of an early diganosis, before you lose too much hair and she did think based on her experience that maybe I would have been offered the anti-malarial treatment option at this still quite early stage in the condtion. My derm here in the UK, Surrey has not offered this... has anyone used/is using anti-malarial drugs, I know this is a treatment option for FFA but don't know why I wouldn't have been offered ?????

Comment by Debs on November 9, 2012 at 12:44pm

Hello Celia, 'bangs' are a fringe in the US. The lady I had my eyebrows tattooed last November has a beauty salon in Richmond, she did a very nice shape and I am happy with them BUT... she did a block of colour and I have since seen people with individual little lines that look remarkably like real hairs from other salons. In my local paper there have been 2 articles about a lady in Chertsey, Surrey that is supposed to be one of the best, she does the little lines so it looks like hair growing and she has worked on the Olympic Gold medal cyclist that has alopecia...

www.belindahayle.com Belinda Hayle 01932 566776/07976

I have not used Belinda yet because my brows are still dark enough from a year ago but I will go to her when I need a top up.

Comment by PamW San Diego, CA, USA on November 8, 2012 at 9:45pm

You will love it. The first few weeks you will be too dark. Give it time and you wont regret it. If I had to draw on eyebrows AND fix my hair, I would never get out of the bathroom. Good luck to you!

Comment by CJ- Christine from Ottawa Canada on November 8, 2012 at 8:51pm

I think its only on the face, BUT who knows!!! The only thing I`m learning is that not that much is certain and lots is uncertain. I`m looking into tattooing!

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