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Comment by Heidi Short UK on May 4, 2013 at 4:39am

Hi everyone- Liz i love your idea of a naked run, can you imagine all of us maturing ladies running through London, at least we wouldn't be worrying about what our hair looked like!!! From your photo you posted, your hair lose is slightly different to mine, I think mine goes back further on the temples but is perhaps less at the front with the 'dolls hair look'. Mine is also completly smooth on the temples with no whispy hairs. You were also saying about frizzy dry hair, mine has also gone very dry, but I use hair straighteners which when used properly (GHD's are the best) really help. I also wear my hair in a similar style to yours, so when we meet up at Celia's shall I bring them to let you have a go. You also mentioned itchy sore ears, I have been been to the doctors this week with a reacurring itchy salivary glands, sore mouth and tongue ,sore spots in my nose and the last straw was when I woke up on Thursday and my left eye had puffed up, it wasn't sore or itchy it was just my eye lid had swollen up! He took more bloods and said there was a type of autoammune disease which can effect the salivary glands, great, something else to look forward too!!!!
Celia glad you had a good visit with Dr Harries, I've been on hyrodroxychloroquine for over a year now with no side effects and it has slowed my hair loss, but it hasn't stopped it completly. I'm really looking forward to seeing you all in a few weeks, it was lovely to hear about Pam and Judy meeting up, its surprising how having someone to talk to can work even more than any medication.
Debs- I did giggle when I read your post to Chrisy, my first thoughts were that's a bit harsh, then I realised what you had done! Thanks for sharing the story of the young girl, I think thats why FFA, at the moment, isn't taking over my life because it could be so much worse, I'm glad its me and not my daughter who is suffering, because I think I would find that harder to deal with. It pulls on your heart strings thinking of all the young people suffering with any type of alopicia, it does put our problems into perspective.
Well I'm off to put my wellies on and tackle my garden,hope you all have a lovely Bank Holiday! X

Comment by Celia on May 4, 2013 at 2:58am

Debs - thank you for that ! You are sooooooooooooooooo right ! You are inspirational and we all need that approach. X

Comment by Debs on May 4, 2013 at 2:37am

Just had an epiphany moment.... I started work very early today... I was sitting down just relaxing when a colleague come up to me, she whispered in my ear do you have alopecia? she went on to say that her 14 year old daughter has alopecia and she fits her lace wigs so she could tell I was wearing one... I said yes I do have alopecia and asked her how her daughter is coping... Well, this young lady is getting on with life and with the support of a very good mum is using wigs to help her appearance. I took her email address and when I get home will send her info on wigs and eyebrow tattoos ... I knew that young people suffer with hair loss but until this morning I had not met anyone that was coping with hair loss at such a tender age... This has really pulled me up and I feel blessed I have only had hair loss at 50 years old and dis not have to live with this when I was growing up. I really feel very different about my FFA since having this conversation.

Have a great day ladies. Xxxxxx

Comment by Debs on May 4, 2013 at 12:47am

Whoops... I meant to address that last post to Chrisy and predictive text made it come out as Christ.... Sorry.

Comment by Debs on May 4, 2013 at 12:46am

Christ, biotin is vitamin H. It does aid hair growth... But it is not a cure for people with alopecia. I am sure it will be good for overall health but it is not tackling the inflammation in our scalps that leads to our hair loss. I am using the turmeric extra supplement in the UK because turmeric is proven to control inflammation in auto immune conditions.

Chrisy I think it is a shame the conventional medical doctors don't take a more holistic approach to treating us, it would be ideal if they could recommend the right vitamins, minerals, herbs etc.. To use that would work for our auto immune condition. Then we could use a more natural treatment plan. I am sure if you take biotin it will benefit you in some way even if that is not hair growth.

If you have a local herbalist maybe you could get expert advice.

Good luck.

Comment by Chrisy, MA USA on May 3, 2013 at 2:05pm

Hi all! I was reading some other posts and another lady mentioned that she is taking biotin supplements and she saw improvement in her hair. Does anyone currently taking this? Shall we consider adding this on the list??

Comment by Debs on May 3, 2013 at 1:59pm

Hi Celia, so glad you had a productive visit up to Salford and that you have the hydroxychloroquine now. I have been taking it for about 8 weeks so it is still too early to now if it will work for me. Thank goodness the injections did not hurt as much this time round. XXX

Comment by Liz on May 3, 2013 at 11:54am

About 5 years ago I had a bad reaction to some cream. The skin on my face burnt and it took several weeks to recover. I looked up the ingrediants online and saw that that one had been banned by other cosmetic companies. The company I bought the creme from used a lot of this in many of there cosmetics. It's a well known company and me and my mum (both who have FFA)used thier products for years. I'm going to try and remember what the ingrediant is and look it up again.

Comment by ElleMN, USA on May 3, 2013 at 10:16am

I keep thinking this must have something to do with hormones, sebaceous glands, toxic lipids...these two articles appeared in our local paper this week and while I can't figure out how it all pertains to FFA, I do think they are interesting. The first one is on how a drop in estrogen effects fat cells, the second is on gold nano particles in cosmetics and how they get stuck in cells and can't get out...More food for thought...

http://www.startribune.com/lifestyle/health/205701571.html

http://www.startribune.com/lifestyle/health/205483331.html

Comment by Celia on May 3, 2013 at 3:49am

Good morning all. Got to Salford yesterday in 3 hours exactly. Had the injections again and they were not so painful, thankfully. Dr Harries sees women with different degrees of FFA. The difficulty with treating this condition is, in part that some meds work for some people and it seems to be as we know so unpredictable. With regard to DNA testing Dr Harries said that was really within the remit of those medics who specialize in that procedure. I have hydroxychloroquine but not very happy about taking meds anyway. I was expecting 2 months supply, 2 tabs per day 200mg each tab. However when I got home I saw that I only have 60 tabs. Have an appt. in 2 months time. Have to go back up next Tuesday so I will try to get the other 60 tabs..............My hairloss was measured as to the forehead loss and it was not significant since last November. One and a half cm seemingly although it seems more to me !
Has anyone on hydroxy.... felt that the condition has stabilised since starting the medication ?
Paula can you e mail me on this site so I can give you directions please ? As I said I cancelled the wrong bits on my profile last week so other people whom I have e mailed before are also not accessible at the moment.
So glad your meeting up went well to all of you across the water - I bet it was lovely to begin to get to know each other.
I'm looking forward to our get together here on the 15th !

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