Alopecia UK Online Forum http://www.alopeciaonline.org.uk/forum/ This is an XML content feed of; Alopecia UK Online Forum : Last 10 Posts Copyright (c) 2006-2011 Web Wiz Forums - All Rights Reserved. Sun, 20 May 2012 23:58:49 +0000 Sun, 20 May 2012 23:52:27 +0000 http://blogs.law.harvard.edu/tech/rss Web Wiz Forums 10.03 30 www.alopeciaonline.org.uk/forum/RSS_topic_feed.asp Alopecia UK Online Forum http://www.alopeciaonline.org.uk/forum/forum_images/web_wiz_forums.png http://www.alopeciaonline.org.uk/forum/ Coping & Appearance Tips : Hair Dream http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13435&PID=339027&title=hair-dream#339027 Author: deirdre
Subject: Hair Dream
Posted: 20/May/2012 at 11:52pm

I dream about having the wind in my hair again... riding my bike downhill dangerously when I was 16 and shaking my head to feel the wind... sticking my head out the car window (before getting a smack round the head from my mother for being silly!)... even riding my pony around bareback with just a bit of a rope to control him... I did some damn silly things as a teenager!

I mostly dream that I have taken my wig off and noticed that my very sparse hair isn't as thin and sparse as I thought, and actually I can do without a wig.... I never dream about it growing back, guess I've come to terms with the fact that it wont... (I have AGA so it's certain without any doubt that it is not coming back). I am still haunted by a dream I had, before any of this alopecia thing, I had a dream I was elderly and caught sight of myself in a mirror, in my dream I was small, frail and elderly, but I had dyed orange hair. I am haunted by that dream because I would definitely have been a little old lady with the bright coloured hair, walking around randomly swearing at people just to shock them.
]]> Sun, 20 May 2012 23:52:27 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13435&PID=339027&title=hair-dream#339027 New Members : The power of the Hat. http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13441&PID=339026&title=the-power-of-the-hat#339026 Author: Ahousewife
Subject: The power of the Hat.
Posted: 20/May/2012 at 11:15pm

I too have been pursuaded to wear a hat but when I wear it I feel like everyone is looking at me (although they are not) but the hats drive me insane and cause excessive itching. I am now going to try a baseball cap.....hats don't suit me but apart from a wig I have no option, I have tried bandanas and hairbands but they just slip off and cause me even more distress I can't clip them in cos my hair is too thin now...I have had AA for about 8  weeks now and the hair loss has been so rapid,steriod creams don't seem to help and I am still waiting for an appointment for the dermatologist lord knows how long I'll have to wait.
So for now I'll have to keep wearing scarfs slippy bandanas and hats!
TC all x
]]> Sun, 20 May 2012 23:15:39 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13441&PID=339026&title=the-power-of-the-hat#339026 Coping & Appearance Tips : "look at what I put my hair through!" http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13445&PID=339025&title=look-at-what-i-put-my-hair-through#339025 Author: deirdre
Subject: "look at what I put my hair through!"
Posted: 20/May/2012 at 11:05pm

Pantene ad.... "Monday it's straight, Wednesday it's curly... no wonder I have so many split ends..."

Just watching this ad with my two (male) flatmates, three of us sat in a row on the couch, when both me and my (male pattern baldness afflicted) flatmate A yelled "Lucky bitch!" at the same time. Other flatmate isn't getting it, but me and A are crying laughing right now.

LOL


]]> Sun, 20 May 2012 23:05:08 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13445&PID=339025&title=look-at-what-i-put-my-hair-through#339025 Coping & Appearance Tips : Hair Dream http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13435&PID=339024&title=hair-dream#339024 Author: SueE
Subject: Hair Dream
Posted: 20/May/2012 at 10:01pm

Lol!  Well, BJ I'm going to think about your post and give it due consideration with the aid of a glass of wine LOL
 
Cheers!!
]]> Sun, 20 May 2012 22:01:23 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13435&PID=339024&title=hair-dream#339024 Alopecia Areata, Universalis and Totalis : Photographer looking for people with alop http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=11689&PID=339023&title=photographer-looking-for-people-with-alop#339023 Author: danielregan
Subject: Photographer looking for people with alop
Posted: 20/May/2012 at 9:55pm

Thanks Claire!

There's also a short video from the launch night on Monday online now. You can see it here:

http://funnytimeofyear.com/2012/05/18/uncovered-exhibition-video/
]]> Sun, 20 May 2012 21:55:15 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=11689&PID=339023&title=photographer-looking-for-people-with-alop#339023 Coping & Appearance Tips : Hair Dream http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13435&PID=339022&title=hair-dream#339022 Author: BeeJay
Subject: Hair Dream
Posted: 20/May/2012 at 9:34pm

I had long hair at 12, when ali-p arrived, and I've not had it since, and I still miss it.  But in my dream I could do the head/hair toss and flounce.  You know when people do that and strut out of a room to make a point.  Its not at all effective to do the head toss and nothing happens!!!  But I could actually FEEL the flounce of the hair in my dream.

Romantic thoughts/dreams and the hair thing... not quite the same - but anyone remember the song (which even for me was a bit old) "take the ribbon from your hair, shake and it loose and let it fall" - it was soooooo very romantic and I used to sob buckets over it, I wanted to be that person, and of course, never was.    Talk about rivers of tears.....  Cry
So many hopes and dreams we have to adjust to.
 
Oh btw purely in the interests of considered opinion and cos its very rude not to, I have been giving this a lot of thought alongside some chocolate cake.   It may need a lot more - thought/cake who cares? Wink
]]> Sun, 20 May 2012 21:34:18 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13435&PID=339022&title=hair-dream#339022 Bloke Zone : Eyebrow treatments - anyone tried any tonics? http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=12374&PID=339021&title=eyebrow-treatments-anyone-tried-any-tonics#339021 Author: Hair2daygon2mo
Subject: Eyebrow treatments - anyone tried any tonics?
Posted: 20/May/2012 at 8:56pm

Hi samphill. I just want to say that during the peak of my alopecia both my eyebrows almost completely fell out. It had gotten to the point where I could no longer disguise them with cosmetics because it was too noticeable. So I decided I'd had enough and got them tattooed on by a wonderful woman called Cathy in Birmingham (I can email you full details if you like). She advised me that it's not unusual for hair to grow back after the tattoos but I never really paid much attention to that. To my absolute amazement, about 2 weeks after I'd finished the tats, my eyebrows started growing back and within a couple of months they were completely back. It's now about 18 months later and I almost have a full head of hair (I was 90% bald) but my beard remains the same. Patchy but I'm happy with it. So whether the alopecia had run its course or the tattoos kick started regrowth I'll probably never know. Just thought I'd share. ]]> Sun, 20 May 2012 20:56:21 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=12374&PID=339021&title=eyebrow-treatments-anyone-tried-any-tonics#339021 Coping & Appearance Tips : Hair Dream http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13435&PID=339020&title=hair-dream#339020 Author: Cynth
Subject: Hair Dream
Posted: 20/May/2012 at 4:58pm

I have hair dreams alot, and then wake up and for a split second cant quite work out whats happened.....Perhaps one day I`ll wake up and it wont be a dream...well I can always dream...  Love to everyone... Cynth]]> Sun, 20 May 2012 16:58:53 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13435&PID=339020&title=hair-dream#339020 Alopecia Areata, Universalis and Totalis : Eyelashes http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13263&PID=339019&title=eyelashes#339019 Author: pammyann
Subject: Eyelashes
Posted: 20/May/2012 at 3:20pm

I have been bald for 5 months now. I find I can tell the people I know well - long term colleagues and folk from church and relatives. I mostly wear a wig as it makes me feel more normal - like the people around me and I hope and decide to assume that people I don't know, don't realise its a wig. Sometimes if I'm in the house and not expecting visitors I wear a scarf as its more comfy, though still experimenting. I used a "buff" - see the great youtube link about scarves/make up etc
http://www.youtube.com/watch?v=BMBmS-v-w5I
I also have had great comments about my hair and unless I know them I say nowt. I once told a consultant at work who kept saying where did I have my hair done. "Do you really want to know" "O God its not a wig!!!" he said. He felt really embarassed, I was just glad I'd duped him for so long and we both laughed about it.
Have worn a scarf outside a couple of times but one person thought I had got cancer and had chemo. No ideal option.
I went for some counselling (we get it free at work) this week - it was great to talk and cry and talk and cry. Would recommend it! ]]> Sun, 20 May 2012 15:20:38 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13263&PID=339019&title=eyelashes#339019 Alopecia Areata, Universalis and Totalis : Immunosuppressants - Azathioprine and Ciclosporin http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13442&PID=339018&title=immunosuppressants-azathioprine-and-ciclosporin#339018 Author: ClaireM
Subject: Immunosuppressants - Azathioprine and Ciclosporin
Posted: 20/May/2012 at 2:18pm

Hi there,

Sorry you have to be here, and please take on board BeeJay and Jaye's comments above as they are truly worth listening to.

I think if you type in the specific words "cyclosporine" and "azathioprine" or "AZT" in the search box, you will find most threads that have mentioned these drugs, and which might be of help to you.
You seem to know already that these drugs are general immunosuppressants, and will have wider effects than just (possibly) suppressing the 'anti-hair follicle' white cells in your body. 

None of us experiencing this stupid disease knows how desperate another is - I reckon we all go through phases where we either feel that we will risk anything just to have 'normal' hair again, or else we cope or survive without it.

I think the biggest factor about taking immunosuppressant drugs is "are the possible side effects reversible?"

Immunosuppressants will do just what they say - suppress your immune system. 
Some will do it in a mild fashion, some in a more specific fashion - but overall they all suppress your body's own efforts to kill off invaders.

Currently accepted hypotheses of autoimmune diseases include that your body has recognised a foreign protein (for example from food, environmental chemicals etc) that is similar enough to the proteins that make up your own body (eg hair follicles) that it has mounted a defence against them - and ends up attacking the cell in your own body that contains most of this protein. Thus your hair follicles are attacked by your own immune system and die. Hence the treatment by immunosuppressants.

One of the many questions we all have about this 'proposed' process is - why does the immune system only attack hair follicles in patches?

There doesn't appear to be an answer to this, or indeed to any of the autoimmune diseases - why is only one area of the body affected at any one time?

Anyway, sorry I have no optimistic answers, but finding a support site is a definitely positive move. 

All the best,

Claire
]]> Sun, 20 May 2012 14:18:03 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13442&PID=339018&title=immunosuppressants-azathioprine-and-ciclosporin#339018