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 EUPATIโ€™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.

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
2 days ago

๐Ÿ‘จโ€โš•๏ธ Don't miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

๐Ÿ“ˆ The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

๐Ÿ” The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patientโ€™s condition is comprehensively evaluated.

๐ŸŽฅ Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!

youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zm
... See MoreSee Less

๐Ÿ‘จโ€โš•๏ธ Dont miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

๐Ÿ“ˆ The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

๐Ÿ” The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patientโ€™s condition is comprehensively evaluated.

๐ŸŽฅ Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!

https://youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zmImage attachment
3 days ago

๐Ÿ˜จ Did you miss our #eular2024 debrief webinar?

๐Ÿ˜ฎโ€๐Ÿ’จ Don't worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters and some of our PAN members!

EULAR Congress 2024 Debrief Webinar
... See MoreSee Less

๐Ÿ˜จ Did you miss our #EULAR2024 debrief webinar?

๐Ÿ˜ฎโ€๐Ÿ’จ Dont worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters and some of our PAN members!

https://www.facebook.com/LupusEurope/videos/815970850254193
1 week ago

๐ŸŒŸ Thank you to all who attended our #eular2024 debrief webinar!

๐Ÿ™Œ Especially to our presenters and PAN members who shared their invaluable insights and experiences.

Stay tuned for more news and updates and don't forget to subscribe to our newsletter! www.lupus-europe.org/emails/
... See MoreSee Less

1 CommentComment on Facebook

Svær sygdom ♥๏ธ๐Ÿ‘Š

1 week ago

... See MoreSee Less

4 CommentsComment on Facebook

To try out LupusGPT, just go to: lupusgpt.org/ This is a multi-lingual tool, so do try it in your language and let us know what you think!

This is the webinar Jeanette Andersen, Lupus Europe Chair, mentioned in her feedback on "CAR T Cell Therapy in Lupus: Promises and Challenges Explored": www.youtube.com/watch?v=JMifTgQgvVs&t=3s

Thank you

LUPUS EUROPE Uniting people with Lupus throughout Europe
Send