My name is Lisa, I am 44 years old and live in Lancashire. I’ve had Alopecia Universalis for 40 years.
In January 1977 I was admitted to Royal Preston Hospital for a routine operation to have a lazy eye corrected. Prior to having the operation, I had a full head of beautiful blond hair. Within one week of having the operation, when combing my hair, my Mum and I noticed that large clumps of hair were coming out. My Mum was terrified and very stressed. If i'm honest I only have a vague recollection of it falling out. My strongest memories are from when all my hair had gone.
We had a good family GP but he didn’t really know what the issue was so referred us to the consultant dermatologist at Chorley Hospital.
My consultant dermatologist was a really upbeat, positive man and took my case quite personally. We tried SO MANY treatments! Firstly, once a week my mum would pick me up from school early and I would be placed under a heat lamp for what seemed like an eternity but probably was only five mins or so. Each week I would go back to see my consultant and he would ask if there had been any reaction and week after week we would say sadly not.
After the heat treatment came the acid on my head and walking home from the hospital with white gauze sticking out from under my wig. This wasn’t the most pleasant experience at all. After that came a cream that was apparently very expensive to the NHS, which was made up by crushing tablets and mixing them into a cream that was to be applied daily - finally no more weekly Wednesday visits to the hospital! I was pleased about this as I could join in Wednesday activities at school.
I think my mum started to lose faith in the doctors at this when I was about 10 years old. This was when the home remedies began - rubbing coconut oil into my head each evening. I smelt wonderful but if it dripped into my eyes - "ouch"! The most crazy of all the homemade concoctions my mum tried was vodka mixed with toothpaste! I have no idea where this one came from! Needless to say it didn’t work. Fast-forward to 1986/7 I was aged 14/15 now and mum had got a referral to a Homeopathy clinic in Liverpool. Yep, you guessed it, lots of chalky tasting tablets to chew but no success.
The final thing I tried was a two week in-patient appointment at Lancaster hospital when I was 17 years old where daily I had acid put on my head until it turned my head completely purple and made the top layers of my skin shed. This was the worse of all treatments for me and after that, just before my 18th Birthday, I said to my mum “No more”. I had tried everything that she wanted me to but it was time to just give up and accept that I had no hair.
I would say the biggest struggle has been the fact that, growing up, I was on the receiving end of cruel comments. Some people can be cruel, judgemental and unaccepting of whatever or whoever does not fit with the ‘norm’.
My new husband Steven has really helped me to come to terms with my alopecia. We met in 2013 and married last October. He embraces my ‘uniqueness’. I’d even go as far as to say he is proud of it. In August last year, he raised money for Macmillan Cancer Care by participating in their ‘Brave the Shave’ campaign. I agreed that if he hit is £150 target we would have a bald photo taken together and post it on our Facebook walls. He hit his target and the photo was taken by my 10 year old son and I have to say, although it felt a little uncomfortable for me, it was quite liberating too!
We are conditioned to blend in not stand out. I am often told by people with hair that ‘If it was me, I’d have a different wig for every day” to which I reply, “Do it then, you can be me!”. But they’d get to take the wig off at the end of the day and be happy with how they looked underneath. I still struggle with how I look without my wig. Having alopecia has made me stronger, especially having dealt with it since being a child. But sometimes I can be too ‘tough’ and this makes it hard for me to express my feelings at times.
I haven’t been to an Alopecia UK group or event and didn’t actually know they existed until I stumbled across the website when looking for a new wig as my preferred one has once again been discontinued!