Gwen & Elin
Gwen and Elin are twin sisters with one difference - Gwen has alopecia and Elin doesn't!
Gwen: I was diagnosed with alopecia 12 years ago at a time when I knew no one else with the condition, let alone a support group or charity to get support. There were some American sites with some information, but it felt so distant and removed that I didn't find it helpful. It was a terrifying experience, as I hadn't even heard of "alopecia" but some googling and research made me realise that what the doctors were saying (i.e. it's nothing to worry about; it's just a fungal infection) was totally nonsense. Second and third opinions pursued, and finally I was diagnosed 6 months later in October 2002. I say finally, because it was a relief to have it confirmed. For the preceding 6 months, I was a bundle of worry, devastation, loneliness and loss. Finally, the consultant did diagnose me with alopecia. However, his words, which I will never forget were "Yes it is alopecia. What a shame for a 25 year old. I 'm sure you can find some information & support on the internet" and pushed me out the door. I left feeling relieved since I knew what I was now dealing with, but still a sense of loneliness and loss. I had no idea how I would cope. My almost non existent hair just sat precariously on top of my head and I wasn't sure how I would face the world.
So my sister and I drove straight to my friends house (Melody) and she got her shaver out and together we got rid of those last remaining strands. Hence the occasional nick-name of GI Gwen :) It was such a revelation and was a very empowering moment. Suddenly, for the first time in many months, I was back in the driving seat controlling my alopecia and not the other way round. There was a very long journey ahead of me, but it was a massively positive start.
For many years I covered up my alopecia with bandanas and scarves. Later I tried wigs in a quest to find something that made me feel normal again. The covering up of my bald head eventually made me quite unwell. I was at rock bottom, constantly paranoid that someone would find out my "secret". It was a burden that I had been carrying around for 7 or 8 years. A year of counselling helped me to rationalise my thoughts and realise that I didn't have to keep carrying this burdening secret. During this "alopecia journey" as I like to call it, I have felt every emotion. Bitterness, anger, loneliness, shame, embarrassment, relief and happiness. I now understand and appreciate that it was a grieving process.
So after years of covering-up, I finally decided that enough was enough and during a summer holiday to Cyprus in 2009 I decided that my wig was staying at home. It was an amazing week of feeling free and so very happy. On my return to the UK and return to work, I went au naturale and was delighted with such a positive response. One very close friend (Helen O) said that it was like seeing a flower blossom. Other positive remarks about how happy and confident I had suddenly become, confirmed to me that this was the best decision that I had ever made!
Thankfully I have a very loving and supportive family, in particular my twin sister who has been my little rock throughout this long journey, but it was missing someone who actually understood what was happening to me. Doctors and specialists certainly didn't have a clue. I was offered no treatment, no options, and no wigs or suggestions of what I should do with this balding head of mine.
12 years on, I decided I wanted to do something drastic and set up a charity in Wales to support those being diagnosed with alopecia. A couple of months later, I met Jen, Jackie, Amy, Jeanette and Helen at one of their Trustee meetings in London. I was blown away by their positivity and passion to help others. So over the last year I have become actively involved with Alopecia UK as one of their volunteers. It's been an exciting year and have helped to raise over 2,500 andhave given a talk to primary school to support a little girl who had been diagnosed with alopecia, and was not coping. I have taken over the local support group in Cardiff, and am embarking on developing an Option Grid for alopecia. I am also thinking of writing a book about my experiences that might give a little hope to others.
Alopecia UK is a wonderful charity and I am very proud to be part of it. All the many volunteers and Trustees work so hard to help others and it is humbling to see so many people coming through this painful process in a positive light, thanks to Alopecia UK.
Elin: When Gwen started losing her hair we felt that it wasn't serious! She had had a patch when she was really young so we assumed it was the same. We soon realised that it was more serious. Within six months she hardly had any hair at all.
It was devastating to see my twin sister and best friend go through this. She has suffered all her life with terrible allergies and eczema so had already been through so much.
I remember her asking me one day how the back of her hair looked. I could see more patches had developed but I couldn't tell her as she was already so distraught. It was really awful seeing Gwen go through this with no support from anyone but her family. She is the strongest person I know and now she is helping other people come to terms with having alopecia and helping them realise that just because they don't have hair it doesn't make them less beautiful.