I’m Alopecia UK’s Events and Support Manager, Jen Chambers. I started volunteering for Alopecia UK in December 2011 and became Charity Manager in January 2014 and commenced my new role of Events and Support Manager in February 2016.
How did I get involved in Alopecia UK?
I originally went to an Alopecia UK team meeting in about 2007, aged 23, as I was researching for my psychology undergrad dissertation on ‘Alopecia and Identity’. I was going to get involved as a volunteer at that point however other things in my life took over and in hindsight it probably wasn’t the right time. I then completed a Masters in Art Psychotherapy, again looking at alopecia throughout my work. Afterwards I wanted to do something with all that I had learnt that may be of benefit to others and so in November 2011, aged 27, I approached Alopecia UK asking if I could come along to their next meeting. Originally I just wanted to do some art therapy with some support groups, however as I became aware of the needs of the charity it all just kind of spiralled and I’ve ended up working for the charity.
What is my 'alopecia story'?
I developed alopecia myself in 1995 when I was eleven years old. I currently have alopecia totalis however it has varied over the years going from areata, to universalis, to full re-growth, to areata, and again to totalis. Having alopecia has been a big part of my life and influenced many life decisions I’ve made, certainly over the last ten years. At points I did struggle with it and I think this led me towards the psychological side of things which is why I completed a psychology with health studies degree and an art psychotherapy masters. I focussed both of them around the topic of alopecia where I could, and both of them were hugely beneficial for me and my understanding of my alopecia journey.
What are my hopes for Alopecia UK?
There are many things that I want to see in place for those affected by alopecia, all of them around the charity's aims of support, awareness and research. However to me the important thing is that we have an organisation that can not only deliver all of this but is also sustainable. In my student days when doing all my research I used to wonder 'why have things not changed?' And noticed several alopecia organisations had just fallen away with all their hard work going with them. I found it frustrating however it highlighted a big vulnerability within the area of alopecia organisations; the dependency on the enthusiasm of volunteers. This just isn’t sustainable for the long-term progression and development of the charity. Sometimes your body and life just won’t let you do it all. I know this from my own experience! It is why my main hopes for Alopecia UK is that it becomes much more sustainable with better structure and staff roles so that those affected by alopecia get the service that they deserve.
So while a big aim of mine in my time at the charity is to get it to a sustainable level, from a personal perspective there are also things I want to see happening. It is my belief that those of us with alopecia are very often overlooked and forgotten about. There seems to be a lack of appreciation of what losing your hair can mean for someone and the impact that it can have on identity & sense of self, emotional well-being and ultimately life overall. I am very passionate about the fact that there needs to be change, change that is going to benefit people with alopecia.
My favourite quote that you may see me use on the forum and emails -
“We must be the change we wish to see in the world” (Gandhi)
I wish to see a lot more out there for people with alopecia. I wish to see better awareness and understanding of alopecia. I wish for better support to be offered and available. I wish to see more time, attention, and money given towards different types of research into alopecia as ultimately I wish that we may all be able to grow hair on our heads! These are all the things I wish to see in the world and thus all the things I will work towards implementing. It’s time for change. And this is why I have joined Alopecia UK. Over the years they have been working hard and beginning to implement change. I feel that Alopecia UK have achieved a huge amount over the years and I look forward to building on this, now and in the future, with the rest of the AUK Team and the alopecia community.