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. Sat, 04 Feb 2012 17:48:20 +0000 Sat, 04 Feb 2012 16:00:10 +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/ Alopecia Areata, Universalis and Totalis : New here, looking for help. http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13026&PID=337422&title=new-here-looking-for-help#337422 Author: BeeJay
Subject: New here, looking for help.
Posted: 04/February/2012 at 4:00pm

Hi again
 
Thank you for the kind words.... from my viewpoint alopecia has taken me to some hellish places, I've been through experiences I'd wish on no-one, and with no forums or family support, I've basically done everything wrong to deal with being an alopecian, and its taken away a lot from my life.  Oh had I known the info on this forums years back.....  I really can't bear the thought of anyone else going through what I did, for want of information.
 
As alopecia is not a condition of the hair in itself, but more the sending of the information to grow it, you can do absolutely anything you like to your hair, dyes, styling, cutting shaving, none of it will make a difference to what the aliopecia will do.  It will however make a big difference to how someone feels about themselves.  And that it so very important.
 
Alopecia Areata actually means patches anywhere on the body... but it can mean one patch or several - but add into the mix its also used as a more general term for alopecia, so sometimes those with total head hair loss (totalis) or body loss) univeralis) might also be told they are AA.
 
Good for you to help out so much... but don't get too consumed by research... in particular ali-p doesn't read textbooks, and case scenarios refer to the 'average alopecian' - who simply doesn't exist!!
]]> Sat, 04 Feb 2012 16:00:10 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13026&PID=337422&title=new-here-looking-for-help#337422 Support Groups, Meetings & Fundraising : Wiltshire / Somerset / Bath / Bristol http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=12277&PID=337421&title=wiltshire-somerset-bath-bristol#337421 Author: awaywiththe
Subject: Wiltshire / Somerset / Bath / Bristol
Posted: 04/February/2012 at 2:43pm

hey guys, id love to meet some people in the same situation. live in central bristol and am free most evenings.....let me know :) sarah x]]> Sat, 04 Feb 2012 14:43:35 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=12277&PID=337421&title=wiltshire-somerset-bath-bristol#337421 Alopecia Areata, Universalis and Totalis : Somebody from Romania? http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13044&PID=337420&title=somebody-from-romania#337420 Author: Brabus
Subject: Somebody from Romania?
Posted: 04/February/2012 at 1:07pm

Hi, I'm 27 years old male from romania, living in London for a year. I suffer from alopecia universalis for 10 years. I'm looking for friends of any nationality or gender.

                                                                                     Mihai]]> Sat, 04 Feb 2012 13:07:22 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13044&PID=337420&title=somebody-from-romania#337420 Alopecia Areata, Universalis and Totalis : New here, looking for help. http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13026&PID=337419&title=new-here-looking-for-help#337419 Author: Jaybird
Subject: New here, looking for help.
Posted: 04/February/2012 at 12:11pm

Hello again, many thanks to both of you for your replies. Your advice is very much appreciated.

Beejay, yes she was given blood tests, and got the results back yesterday - was just told her TSH was 'slightly off' and that they'd have to take another test next month. There was no explanation of what this meant, but after some homework I can see that this is indicative of hypothyroidism - so we have to consider that this is possibly/probably connected in some way.  As if the hair loss wasn't bad enough. Haven't replied before now because I've been so busy reading up on both conditions.

In all my reading there seem to be many websites that say in the majority of cases alopecia areata causes only one or two patches - but just about everybody posting about it seems to have lost a lot more hair. I have attempted to muster some optimism by considering as you said above, that the people who aren't so badly affected don't stick around to post about it. I hope that this is the case, although I can't help suspecting that major hair loss is more frequent than these sites suggest.

Oh, and Beejay - whenever I look elsewhere on the forum I see you posting lovely advice to everybody - I'm very impressed at the amount of time you must take to help and reassure people. If there's such a thing as good karma, then you should have bucketloads of it.

Just another word on the original GP appointment for anybody reading this in future - The anti fungal shampoo the doctor prescribed (generic version of Nizoral) directs to use it no more than twice/week, but he advised to use it every day for two weeks - he also said that she should never dye her hair again.  We don't like going against doctor's advice, but aren't comfortable with 14 daily washes of her very long hair against the manufacturer's instructions, and don't believe that hair dye has anything to do with it either, so won't be following his advice on these matters. Should be seeing a different GP next week, but in the meantime I guess that keeping fingers crossed and trying to stay positive and informed is about the best we can hope to do.


]]> Sat, 04 Feb 2012 12:11:09 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13026&PID=337419&title=new-here-looking-for-help#337419 New Members : Hey All... http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13039&PID=337418&title=hey-all#337418 Author: BeeJay
Subject: Hey All...
Posted: 04/February/2012 at 8:49am

Hi and welcome
 
Alopecia takes away more than our hair, and the emotional roller coaster it sends us on can be quite a horrendous ride.  It doesn't matter how much hair is lost, depression/feeling down about it can really have a strong effect.
If you feel really bad do consider seeing your doctor for anti depressants.  Depression of itself is a chemical imbalance, the pills right that balance.  No, they won't cure the reason for being depressed in the first place, but they do get you to a point when you can deal with things better, and take action on things which you can do to help.  Do stick with the doc if you take anti-ds, its very important that you are monitored, and on no account stop taking the pills without doc supervision.   I've had them a few times and they are a real help.
 
Finding the way through ali-p world to a place where you feel easier with things, can be hard.  The emotional aspect of this condition is often likened to that of bereavement.  Just like a bereavement it takes individuals as much time as it takes to work through.  We grieve on two levels.  One the actual physical loss of our hair... and the other is the loss of ourselves as we recognise ourselves to be.  Suddenly we start to doubt who we are, what we can do, where we can go.... its all the ali-p voice talking, and its an aspect its very very good at.  You are still you, you can still do and be whatever you want, its just a matter of finding that person again.
Being here can help enormously, because members know how you feel,  travel that road themselves, and that can be a huge comfort, not feeling alone any more.... and a phew, not going mad, especially when we are often surrounded by that hated phrase "its only hair" - its so much more than that, and can affect many different aspects of our lives.
Best wishes
]]> Sat, 04 Feb 2012 08:49:42 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13039&PID=337418&title=hey-all#337418 Alopecia Areata, Universalis and Totalis : New girl http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13037&PID=337417&title=new-girl#337417 Author: Cynth
Subject: New girl
Posted: 03/February/2012 at 3:29pm

I really hope in your case that your lovely hair will grow back, mine didnt, well I do now have some straggly bits BUT its not all doom and gloom, you will have good days and well as bad days and you do learn to live with it, and wigs are fantastic now, I tend to get a new one every 6-9 months, I have to say not from the NHS, and if you look at it financially you dont have to spend a fortune of hair cuts, colours etc, I know thats small comfort, and we would all like to go to the hairdressers.  You need to stay very focused, dont get swayed by people trying to sell you stuff that doesnt work, it will just make you even more frustrated.  I only joined the forum last year and how I wished that I had done it years ago, to share ones fears and worries can only be a huge help, and to talk to people who understand where you are coming from is a great comfort, and believe it or not sometimes amusing, take great care and fingers crossed, well everything crossed for you in the future, but make sure that you check out this forum on a regular basis, it will help you in so many ways.  Lots of love CynthSmile

Edited by Cynth - Yesterday at 7:30pm]]> Fri, 03 Feb 2012 15:29:44 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13037&PID=337417&title=new-girl#337417 Alopecia Areata, Universalis and Totalis : New girl http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13037&PID=337415&title=new-girl#337415 Author: BeeJay
Subject: New girl
Posted: 03/February/2012 at 9:25am

Hi, welcome to our new friends, though sorry you have cause to join us.

One of the biggest things to come to terms with, in being an alopecian, is this constant uncertainty it brings with it.  As it doesn't come with set patterns or time lines or it will do ABC.   Almost accepting you won't understand it is a way forward, because, it can drive you la la trying to work things out.  Not that i'm saying don't try to understand or investigate, just that it has a very nasty habit of when you get a handle on it, right its doing this, I get it.... it changes.
 
Doctors don't have a magic answer for us... there are indeed treatments and they do work... but its a case of what works for one person may not help another.  So its personal choice as to whether to explore what's on offer or not.  Its just not so simple as seeing reading of a treatment and saying, I'll have that one.
There can often be a wait to even be referred to a dermatologist.... GPs often delay because of the nature of alopecia - its ability to recover all by itself, so they often suggest a wait to see what is happening before referral.  Being the condition that it is, its perfectly possible to have regrowth in one area but loss in another at the same time.  The derm won't have any magic answers either, but they will have more treatments available than the GP does... hopefully you will feel better for seeing them, getting more information, as they also likely see more cases than a GP.
 
There's lots of info here about all sorts of ways to manage being an alopecian, from people who actually know because they try it themselves.
Just remember the forum is not a rounded viewpoint... those who recover from ali-p have no need to stay here, so it can seem a bit doom and gloom.  But sticking around you can see people's progress over time, and how they manage the who situation.
 
]]> Fri, 03 Feb 2012 09:25:17 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13037&PID=337415&title=new-girl#337415 Alopecia Areata, Universalis and Totalis : wigs http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13018&PID=337414&title=wigs#337414 Author: Hair Matters
Subject: wigs
Posted: 03/February/2012 at 7:22am

Hi Virginia,

Can you give me the name of your bonded system/ Enhancer so I can have a look via the Internet, or do you have any ideas where I can get more ladies interested in the Enhancer I have got (the ladies would have to live in Spain) so the company would send a consultant out to Spain every six weeks, I would now never be without my Enhancer but going back and forth to England is costing a great deal.

A big Thanks.
Rachel.]]> Fri, 03 Feb 2012 07:22:07 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13018&PID=337414&title=wigs#337414 New Members : Hey All... http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13039&PID=337410&title=hey-all#337410 Author: job36421
Subject: Hey All...
Posted: 03/February/2012 at 1:07am

Im new on here but not new to Alopecia,
i started with traveling patches over 4years ago and now i have full body loss, i think its called ""Universaliariss?"".
I was started with a PUVA treatment just over a month ago but it dont seam to be doing much!
i was wondering if there is any one out there who is the same as me and feel really unhappy with them selfs for been down and out all the time?
i dont know if there is a direct link to feeling depressed or down and out but i sure do....
 
]]> Fri, 03 Feb 2012 01:07:11 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13039&PID=337410&title=hey-all#337410 Alopecia Areata, Universalis and Totalis : newbie! http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13038&PID=337406&title=newbie#337406 Author: welshlass
Subject: newbie!
Posted: 02/February/2012 at 9:02pm

HugHey! I'm a newbie too! heres a little background to my story...... I found my first bald patch on the 23rd of December 2011 - I knew straight away that it was alopecia but didn't fully understand what this meant. I have visited my GP and she explained to me that I probably have Alopecia Areata. I am seeing my dermatologist for the first time in March....geez long wait!! My first patch is around 2 1/2 inches long and 2 1/2 inches wide! Massive to me!! But this has already got signs of re-growth exept it is getting larger now and has no hair on the newer areas. I also have 2 other patches around the size of a 1p piece. I also have a diffuse shedding all over and would say that I have lost approx half my hair in volume!- thankfully my grandad gave me superbly thick hair. And so far it's not visible to anyone else ... yet! But the sheer quantity of hair that I hoover up daily and find stuck to absolutely everything Im not sure how much more i can loose before it is visible. I can only take comfort in knowing that probably everyone on here knows exactly how I felt and still feel about this condition, can I cope? Will I cope? Some days yes! some days no! But hey ho>> such is the life af an alopecian......
]]> Thu, 02 Feb 2012 21:02:00 +0000 http://www.alopeciaonline.org.uk/forum/forum_posts.asp?TID=13038&PID=337406&title=newbie#337406