Replies to This Discussion

Permalink Reply by Gill on August 9, 2009 at 2:09pm

Hive
Welcome to the world of Alopecia !!
I have AU, it started 7 yrs ago when my hairdresser found a bald spot about as big as a 10p peice, this grew back....GREAT......2 months later she found another 2 ! Doctor said, dont worry they grow back and its just stress. Within 6 mths I had lost more of my Aubun below shoulder length hair than I had kept. Dr said I will give you a thyroid test, came back inconclusive, so off to the hospital to see a Dr about Thyroid, that turned out to be ok.
So then had to wait to see a derm, by the time I got an appointemnt, I had been totally bald for 3 months.

I found her so patronising, she looked at my scalp through a magnifyed light and said in a matter of fact way " The chances of you hair ever returning is very slim. So there is no point in me doing any light therapy, you will just have to come to terms with it".

I then had to wait 6mths to receive a wig, as they had not put me down in the corrrect catogory, the woman on the phone said I might not be telling the truth, I did offer to go down and show her my head.

I then requested another NHS wig this year, and because II had not had some last year, they had taken me off the list, so I then had to have another derm appointment. Really nice guy who said he was shocked that I had not seen a derm for 5 yrs, and went throught all the treatments and came to the conclusion, I was a bit of a lost cause. I told him that I know there was no treatment and the only reason for coming to see him, was that I had been crossed off the NHS list.
I then got my perscription and wigs, which I wear about 3 times a year, prefer to go bald.
So my feelings towards the NHS in my area, is not good for Alopecia, it seems they see us then ignore us, as they do not know why we loose our hair. I think they should do a lot more to support people. I have had no support from the NHS at all. And unfortunatly I can not afford to go privatly.
I think support from other in the same situation is what is needed, as the general public do not understand how it effects your life. \my \alopecia was a big reason my marraige split up, my ex could not cope (says more about him than me).
So there is my experiances, sorry it was a bit of a ramble.

Permalink Reply by Steve on August 9, 2009 at 2:44pm

Thanks Gill - interesting to hear your experiance, I'm sorry you have had such a hard time of it.

I know what you mean about the lack of support. My derm spent no more than 5 mins with me after waiting nearly 8 weeks for an appointment with her! Did't even look at my head! I do somehow get the impression that allot of derms just regard this as a 'minor scin complaint' that isn't going to damage our health, disregarding the emotional impact...

Permalink Reply by Robert on August 9, 2009 at 3:25pm

Hi Gill

I got about 10 minutes with NHS dermatologist and got fobbed off with a mild steroid cream which was only to be used in patches which were more than 12 weeks old, and come back and see him in 2 months. He didn't even do a thorough examination of the patches - just a quick look. The private dermatologist did a much more thorough investigation and prescribed Dermovate use in all patches.

I wouldn't even have had an NHS appointment by now as the 12 week waiting list meant that I wasn't due to get an appointment until mid-September as alopecia is not deemed to be "serious" enough to merit a quick appointment. Luckily I got a last minute cancellation after speaking to the most helpful NHS receptionist ever.

I think that the emotional impact of this condition is underestimated. I didn't realise that I was so "vain" before this happened to me, but I feel absolutely devastated by the alopecia, and am trying to fight back and not let it zap my confidence.

The private treatment isn't cheap but, luckily, I've got an amazing boss that offered to cover the costs. The first appointment was £110 but this didn't include any treatment costs as I got a prescription for the dermovate cream. I wonder how much the steroid injections cost?

This friggin' alopecia is a nightmare!

Permalink Reply by Gill on August 9, 2009 at 4:26pm

Yes your right, I dont think people relise the emotional distress this causes, and it does effect your confidence. I go through the senario " 50 chunky and divorced is bad enough, let alone 50 chunky divorced and bald, is just too much". Even after 6/7 yrs, a comment or look, can sent me scurrying home. Then there are the good days where the "go on, I dare you to comment" sprit comes out. I like those days best.

Permalink Reply by margaret watson on August 10, 2009 at 4:42pm

In brief - I have suffered bald patches since the age of 18 and a half, leading to wearing a wig after birth of 1st child age 25. I hated them but did not know what else to do - just an ordinary woman who taught in a primary school. Then by 40 my hair was not too bad and only had a couple of patches and felt strong enough to take off my wig even though everyone in my world only knew me with a wig - that was the scariest moment in my life - walking into school 1st day back in September with no wig. VERY TRAUMATIC. But once I found out that actually people did not mind my hair looking a mess, it started to fall out again I never needed to put on my wig (only if I wanted to if we were going out for a meal or I went shopping around town/Tesco etc) The point being it was if I made the choice to, not me thinking dare I go out without my wig. Then suddenly 18 months ago all my hair fell out not just on my head but everywhere! However when one gets to 51 years of age I think there is a continuing growth of confidence (for me anyway). Who was I wearing a wig for? Other people so they wouldn't be shocked! Why? It was my life I was living and not theres! So after researching the web I came across Alopecia World and joined the conversations along with many other suffers. I found quite quickly that I had gone through all the same things as everyone else but unlike most had been able to rise above the emotional side and developed an inner strength knowing others (on paper anyway) who had all or were struggling with Alopecia.
Suddenly since last Easter I have blossomed and now almost want to go out there and tell the world about women being bald! I think it is a terrible thing for women and only people who suffer really know the sadness that they are not like others. And yes they can hide behind a wig but they are horrible to wear in the summer when it is hot and you're just a normal active women swimming, walking, camping, sailing, teaching, cooking round a camp fire with children - just think of all those embarrassing moments possible should your hair fall off! The worry of that constantly worried me.
I am now totally happy about walking into a room full or strangers 'bald' - and not turn a hair!!!
If I could do anything for other suffers I would like to. I have enclosed a picture and am happy to speak more to you about any part of the above. BY the way I met my husband to be when I was 17 and a half and was very happy. I married him at age 20 and we have 2 happy children age 24 and 27 now. We have been married for 31 years and he has supported me throughout. I have been one of the lucky bald ones I think. It must be really hard for husbands. At least I can't see myself all the time - they can! The only good thing is that I am 100% healthy and happy but bald. It is a cruel world we live in. 'Why me?' is the only question I am always asking myself! I can empathise with every word you have said! Take care.
Margaret

Permalink Reply by Gill on August 28, 2009 at 5:06pm

Well put Margaret. I am 51 also, and have not worn a wig at all this year. Its great not to have to worry about my "hair".

Permalink Reply by JET on December 2, 2009 at 10:57am

Hello; I just wanted to stop in and say Hello. Have a wonderful weekend.

-Jet

Permalink Reply by Lizzie on July 21, 2010 at 6:18pm

Hi Steve, I was only 6 when I developed alopecia, I remember being sent to the hospital to see a consultant, who basically just told us that it was alopecia areata, since then I have been perscribed, Zinc suppliments, betnovate steroid creme/ shampoo/ lotion, nerkrin tablets (not all at the same time!) And when nothing had any effect I was given a horrible bleach blonde NHS wig. I still have it somewhere, it really is awful.
I just don't think that the NHS cares for alopecians much, whether it is lack of funding or lack of information on it.