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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11 hours ago
LUPUS EUROPE

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Thank you Martijn, for your question! We will ensure your question is raised 🙂

Thank you for following this joint Lupus Europe / ERN ReCONNET webinar! If you have any questions for the speakers, please post them here and we will ensure they are raised! 😃

Hi from Corfu thank you for this it was really helpful!!!

I am curious about diet and microbiome as well. I think the topic is very much understudied and not good understood - but has great influence.

There are huge differences!

Are there possibility’s with food to have remission

There were only young people for the treatment with Car-T cells In am nog young any more. Is ther hope for me?

Only on my phone de zoom started. I do not know why

Metty Staal volgt

What is there to expect the coming years. I mean mean in treatments?

Thank you very much professor Arnoud

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12 hours ago
LUPUS EUROPE

Our joint webinar with ERN RECONNET is also going on Facebook Live!

If you have not been able to register, go to our Facebook Page and enjoy "#EULAR2023 Debrief–for people living with #lupus".

1 hour to go! 😃

www.facebook.com/LupusEurope
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Our joint webinar with ERN RECONNET  is also going on Facebook Live! 

If you have not been able to register, go to our Facebook Page and enjoy #EULAR2023 Debrief–for people living with #lupus.

1 hour to go! 😃

https://www.facebook.com/LupusEurope
20 hours ago
LUPUS EUROPE

🚨Don't miss our webinar today🚨

Along with ERN RECONNET, we have organised this "#EULAR2023 Debrief–for people living with #lupus" webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).

Register by sending an email to secretariat@lupus-europe.org now!

This is the link to the webinar: us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

Registration is compulsory.
... See MoreSee Less

🚨Dont miss our webinar today🚨

Along with ERN RECONNET, we have organised this #EULAR2023 Debrief–for people living with #lupus webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).
  
Register by sending an email to secretariat@lupus-europe.org now! 

This is the link to the webinar: https://us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

Registration is compulsory.

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Not succeeding to send an email for registration. I would like to participate. Thanks

Bonjour, en quelle langue sera la webinaire s'il vous plaît

Joy and happiness is all i see around ever since i came in contact with this great man. i complained bitterly to him about me having herpes only for him to tell me it’s a minor stuff. He told me he has cured thousands of people but i did not believe until he sent me the herbal medicine and i took it as instructed by this great man, only to go to the hospital after two weeks for another test and i was confirmed negative. For the first time in four years i was getting that result. i want to use this medium to thank this great man. His name is Dr aziegbe, i came in contact with his email through a friend in UK and ever since then my live has been full with laughter and great peace of mind. i urge you all with herpes or HSV to contact him if you willing to give him a chance. you can contact him through this email DRAZIEGBE1SPELLHOME@GMAIL .COM He also cured my friend with HIV and ever since then i strongly believe he can do all things. Don't be deceived thinking he does not work, i believe if you can get in contact with this man all your troubles will be over. i have done my part in spreading the good news. Contact him through his email and you will be the next to testify of his great work. web.facebook.com/Herpes-std-cure-dr-aziegbe-herbal-cure-103360314788997/

1 day ago
LUPUS EUROPE

One of our PAN members explains to the Italian lupus community what is #Lupus100 and what it can offer: high-quality and reliable information about #lupus in a patient-friendly language!

At the moment, available in 🇬🇧 🇩🇰 🇩🇪 🇪🇸 🇬🇷 🇫🇷 🇮🇹 🇳🇱 🇷🇴 🇫🇮 🇺🇦.

More languages to come soon! Stay tuned, and don't miss it!

lupus100.org/
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Grazie

💜💜💜

LUPUS EUROPE Uniting people with Lupus throughout Europe
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