My name is Karen Green and I am a former Trustee for the Charity Autoimmune Alopecia Research UK (AAR-UK). Since the merger with Alopecia UK I am now Chairperson of the charity's Research Committee.
How did I get involved with AAR-UK?
As many of you will know, the journey through Alopecia can often be a long and difficult one. My Alopecia took me to the depths of despair and during one of these desperate days I came across a blog written by a lady called Jayne Waddell. Jayne wrote in detail about her battle with Alopecia Universalis and how she felt not enough research was being done and insufficient information was being given by GPs to patients when someone is diagnosed with this devastating condition. I contacted Jayne and she told me she wanted to set up a research charity purely to look into Alopecia research and asked if I would join her. I jumped at the opportunity to finally try and do something to find a cause and cure for this cruel disease and I offered my support. That was in November 2012 and we worked very hard to raise funds and achieve the start of various projects and develop links with the medical profession. The past few years with AAR-UK included many changes of personnel and trustees, including Jayne herself who has moved to Australia, but her legacy remains as we now combine our efforts with AUK. Together we can achieve so much more.
What is my Alopecia story?
On 1st October 2011 I was sitting in my garden on an uncharacteristically hot day, surrounded by my family celebrating my son's 30th birthday. I felt a wonderful wave of happiness and contentment on that day - thank goodness I did not know what was just around the corner. Within weeks, all of my hair had fallen out and I had been diagnosed with Alopecia Universalis (AU). I assumed there was a treatment I could take that would bring my hair back, and that it was curable - all I had to do was find it. I struggled to find very much support or understanding within the medical profession and I was given a cocktail of steroids and minoxidil which meant I seemed to pick up every bug that was going around. I therefore asked for my Grandchildren not to come to visit if they had a cough or cold as I would catch it and develop bad infections. I became more and more isolated as I found the "off the shelf wigs" uncomfortable to wear, and was constantly worried that it would fall off.
At the time, I worked with troubled teenagers and was concerned that if I was breaking up a scuffle my wig may fall off. My hobbies included gardening which proved challenging as my wig kept slipping and as I pushed it back into place I covered myself in mud. In the end I was diagnosed with depression. I went to see a counsellor to talk about my feelings of loss, in particular loss of identity. After all, the face looking back at me in the mirror was not the same one I had become used to for over 50 years.
Slowly I began to build a new me and now 6 years later I still have AU but I have made a lot of changes. I have been lucky enough to take early retirement and feel I have now accepted my alopecia, but I am still driven to help other people with this condition. My story is not one of despair - but one of determination.
What are my hopes for Alopecia UK?
I am really looking forward to working with AUK and my main focus still continues to be research into Alopecia. Research in the UK is still in the early stages compared to the USA. AAR-UK attended the National Alopecia Areata Foundation's annual conference in 2016 and I aim to continue this relationship now we have merged with AUK.
I am hoping to develop the research aim of the charity, bringing together experts from all areas of academia and industry to start a co-ordinated approach to Alopecia research in the UK. My ultimate hope is that AUK is recognised as a leading player in Alopecia research and that this encourages more projects seeking sponsorship.