Hello, I am Amy Somers. I joined Lupus Europe as part of the Patient Advisory Network (PAN) in June 2018 and I became a trustee in Sept 2021. I have completed EUPATI’s training in medical research and development and I am a EUPATI fellow https://eupati.eu/ . I also volunteer with Lupus UK, and I am on their Northwest committee.
I live in the UK; I am originally from York but have lived in Manchester since leaving university. I worked for over 10 years in film and television as a camera assistant. I then retrained at Manchester college in patisserie. I bake for friends and family and occasional commissions when my health allows. I have worked as a barista on and off throughout university and beyond and LOVE coffee!
I was diagnosed with Lupus nephritis in 2012, at the time I was 27 working full time (60+ hrs) in a high paced all weathers physical job that I loved, my only symptom was swelling in my legs. It was a whirlwind, and I was very much in denial to the implications Lupus and being immune suppressed was going to have on my life. I did not engage with/ actively pushed away patient organisations until around 2016 when the burden of Lupus became overwhelming, and I realised I needed outside support. I also got a little nudge from my mum! From this I met an amazing group of Lupies who educated and supported me and my family in so many wonderful ways. They made me feel part of an inspiring community.
Currently, my active disease does not allow me to be employed full time, but I have found a renewed self-worth and sense of achievement in the work I do for Lupus charities, which I lost when I had to step back from my career. Volunteering gives me the freedom and understanding to rebuild and to learn what I am capable of.
I now have a real passion for educating myself in Lupus with an emphasis on medical research and development and can potentially see a new career path that I can incorporate in a symbiotic way with my Lupus.
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