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Lorna helps Alopecia UK go 'Back to the Future'!

21st October 2015

Today is ‘Back to the Future Day’!

21st October 2015 is the date to which Marty McFly and Doc Brown travel in the popular 80s film Back to the Future II. Although the sky is not full of flying cars, we’re not popping to the shops on hoverboards and we’re still having to tie our own shoelaces, as of today, we are now living in the future! ;-)

We thought it would be interesting to talk to someone who has had alopecia since 1985 (the year Marty and Doc travel from) and find out what their hopes for the future were back then and if any of them have come true.

Lorna Weir (age 57) has had alopecia areata for approximately 50 years. We had a chat with her about her experiences.....

Back in 1985, what was your experience of having alopecia areata?

Until 1981 I had periods of full regrowth and patchy baldness, but after 1981 and the birth of my son all my hair fell out.  In 1985, or around this time, I was undergoing treatment, dermajet (steroids). Over the next few years I had some regrowth but never a full head of hair.

I knew no one with Alopecia, didn't talk about it, never told anyone other than family and a few close friends. I was always worried people would find out. I wore a wig all the time and was scared to death of a windy day. I missed out on funfairs and swimming.

One experience stands out - I went on a nursery day out with my son, to a country park. Children and parents were encouraged to crawl in the bushes and imagine what it was like to be an insect in the grass. I did it because, nothing would have made me disappoint my son. To this day I remember the terror, the feeling that I might snag my wig on a branch and lose it.  Never again did I volunteer to help at a school outing, in case they asked me to do something that would put me in jeopardy of losing my wig. I feel my children missed out on care-free mum.

What were your hopes for the future back then?

I hoped for advances in treatments/cure, improvements in wigs, greater awareness of the condition, better support and a change in public attitudes.  

Do you think the ‘future’ (2015) is a better time to have alopecia? Do you find it easier to have alopecia today than in 1985? 

Some things are better, others remain the same. Treatment has not changed much, I personally no longer visit Dermatology. I feel I have done all the treatments available without finding a cure. This frustrates me no end; all these years and still no further forward.

Wigs are much better and there is far more choice these days than years ago. Even back in 1985, wigs were very 'old lady' styles. Although a down side is the postcode lottery for prescriptions and difficulty accessing to treatment, depending on your GP or Consultant's view on your need. I have to say I am very lucky to live in Tayside, Scotland. We get free prescriptions and have wonderful consultants at Ninewells hospital.

The internet today gives us far more access to what is going on in the world at large. Social Media brings people together, giving virtual support and the opportunity to meet others in person if you wish to. Today I have a network of friends and acquaintances with Alopecia, which I would never have met without the World Wide Web. Although the first person I got to know I have to say was through an article in a local paper, so lets not disregard printed media.

All have helped me gain lots of support, which in turn has helped me grow in confidence. I don't hide the real me anymore. I talk openly about my alopecia, to anyone who is willing to listen. It's one of the first things I tell anyone new in my life, it gets it on the agenda from the start, no need to worry about any situation that may arise after that. I've discovered people are much more accepting and better educated about all kinds of things. Differences are accepted; what is "normal" anyway? Once we accept ourselves, we can move on.

How has Alopecia UK helped you to reach the point you are now at with your alopecia?

The first ever awareness event I took part in was with Alopecia UK, the alopecia flash-mob in Liverpool in September 2013. I heard about it via the newsletter earlier in 2013 (wow what a long way I've come in a few years!) Since then I have attended both 'Big Weekends' in London (2014) and Manchester (2015). All Alopecia UK events have been very informative with lots of advice available and have given me an opportunity to meet people face to face in a safe, secure environment. The flash-mob however was a big one for me. It was emotionally charged and a great release, my first major step in accepting me. Without all the other people with alopecia, for support, I could not have taken that step. Since the flash-mob, I'm much more involved and try to support as many as I can with online chat and face to face meetings whenever possible. It keeps me in touch and helps me support others even if it is only a Facebook message now and again.

In Scotland I have been involved with Scottish Alopecia Support Group, for over 4 years or more. Kate its founder, is the lady I met through the newspaper article, my very first friend with Alopecia. The Scottish group is a community of friends, like a very large family these days who have alopecia or care for someone with alopecia in Scotland. Since its origins just over 4 years ago, Kate and I have travelled the length and breadth of Scotland meeting up with people who have Alopecia, bringing them together with others. Most have a story like mine of being alone with Alopecia until they found us.

My ultimate desire is that there will never be another person young or old who feels they are alone with Alopecia, or anything else that makes them a little different from the so called norm. A big dream I know, but if I can help a little towards that goal I'll be happy.  

A big thank you to Lorna for sharing her experience. It is good to know that things have improved for people with alopecia over the last 30 years and we hope that further improvements happen over the next 30 years.

Alopecia UK did not exist in 1985. We couldn’t provide information, support and advice to people struggling with alopecia back then. But we are here today and hope to be around as long as people need us.

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