Alopecia World
www.alopeciaworld.com
Where are we all?
I went to Doctors the other day - not AU related - and in conversation he said he had at least 10 patients with AA/AU. Now this is just one Doctor in my local area, if this is an average number of AU/AA patients then there must be hundreds of us even locally but I have only ever seen a couple of people and there is no support group in our area or even close.
Thats the trouble, most of us hide (I personally wear a wig outside the house and draw in eyebrows and an eyeliner to hide the lack of eyelashes, plus I wear glasses) so we don't get the chance to talk to other people personally except through this site. Mind you this site is excellent.
Thats the trouble, most of us hide (I personally wear a wig outside the house and draw in eyebrows and an eyeliner to hide the lack of eyelashes, plus I wear glasses) so we don't get the chance to talk to other people personally except through this site. Mind you this site is excellent.
Replies to This Discussion
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Permalink Reply by Tracy on
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Good question!!! I'm sure I'm not the only person in Portsmouth with alopecia but everyone else seems to be hiding!!
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Permalink Reply by Sam G on
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Ola Diana, I'm from South Devon. Lots of people say to me they know someone with alopecia but that is mostly a small circle of hair loss, don't know of anyone locally that lost alot of hair yet!
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Permalink Reply by Diana Hastings on
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I know what you mean - well-meaning friends have said to me that they have known some-one with Alopecia but they just don't seem to understand what it is like to have no hair at all (my eyebrows, eyelashes, nasal hair and body hair has all 'hit the dust' and my head looks like an aging billiard ball or egg - nice and shiny too! I have found there is not a lot of point my talking about it to friends, other than on this site where people understand.
You look great in that wig by the way! -
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Permalink Reply by Helen Wallwork on
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Have you looked on the Alopecia UK web site?
There are quite a few groups around the county (I'm near Cambridge) but you could always start one up - there''s potentially another 10 member near you for a start.
Where abouts are you?
Cheers
Helen -
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Hi, lovely to hear from you. I'm at the seaside in Hastings!!!
I don't know of any support groups near here. I know it sounds selfish but I don't really want to take on a group myself as I've only just come off one local Club Committee where I've been Secretary for the past 10 years (nothing to do with AU).
Its great that we can 'chat' to each other on this site.
Diana -
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Hi again - please bear in mind that geography is not my best subject but I think Hastings and Brighton are both on the south coast? I'm not sure how close they are ot each other but this might be of use - I found it on the UK site!
"Brighton
Michelle Smith
Email address and contact telephone number
michelle.smith@alopeciaonline.org.uk, 07984 536 909.
Meetings
Our next meeting is on Friday 5th February, 2 to 4pm at the Conference Room, Brighton General Hospital, Elm Grove, Brighton E Sussex. Our meetings are generally every every 3 months at the same time and location. Refreshments will be available.
No charge to cover costs. For men, women, children - all alopecia sufferers, all types of hair loss. Michelle is CRB checked as she helps at her local school.
The aim of the group is to get together to support each other and not feel alone."
I travel quite a distance to go to my group meeting but I understand that not everyne is will ing or able to do so,
I feel a bit of a fraud sometimes on both sites, I have Androgenic Alopecia so I will always have some hair (unless I develop both types) however hairloss is hairloss so I have joined both sites to meet others in that same situation. I curently have a very expensive integrated prothesis but I am currently contemplating a hair transplant so if any one out there has experience of it plaese can you contact me.
Regards
Helen -
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Thanks Helen
Brighton is not too far away. I can't make the next meeting as I will be away for the next week but will definitely get in touch with them. I've also got an appointment at our local hospital in a fortnight - don't expect it to result in any hair regrowth but they might offer practical help re meeting others in the same boat as well. (May even suggest the Brighton group).
Thanks everso for going to all this trouble to help me. You are a pal.
Diana x
p.s. Sorry can't help you in return re your replacement hair. However, as I don't have any hair at all, I know a bit about wigs and hats tho!!!! And I'll always listen if you want to 'chat'. -
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NO prob - It wa a simple cut and paste job from the other site.
Any form of hairloss is an issue for the person expiencing it - however I read something the otherday about a person with AliP who had been humbled (not in a nasty way) by the partner of a woman who had died of cancer - it made me realise that in the great scheme of things that loosing my hair, although distressing, confidence sapping etc etc etc is not the worst thing that could happen to me, it kind of made me do that good old fashioned thing of counting my blessings.
Have a good week
Helen -
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Permalink Reply by Kathryn Michael on
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I'm new to this - I got my first wig two weeks ago and I live in North London if anyone else is in the area.
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Permalink Reply by Nicola Jones on
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Hi, I am in Manchester, I have developed what I'm certain is aa in the last few days but am in the process of trying to get diagnosed as my GP seems to know jack all - lol
I am trying to stay positive and remember that things could be a LOT worse!
This site is great, this is my first morning properly exploring (skiving at work) and I'm pleased to find so much information, support and positivity ♥ to you all ♥ -
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Permalink Reply by Keeley Tomlinson on
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I live in Sleaford, Lincolnshire...the closest anyone gets to Alopecia around here is shaving sheep! lol
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