In September, during the LUPUS EUROPE convention, we were delighted to welcome Jeanette Andersen to the board. She has written a little introduction for those who don’t already know her from her work in LUPUS EUROPE and Young PARE.

JeanetteAndersen04 head shot

“I was diagnosed with SLE in 2011, although I had had symptoms of the disease since the year 2000. I have a master´s degree in German and Philosophy from the University of Copenhagen and was a teacher in higher education until 2012.

Since I had to stop working in 2012, I have dedicated my time and energy to volunteer work for Lupus Denmark. In addition, I am a EULAR Young PARE working group member and now also on the LUPUS EUROPE board of trustees.

SLE has changed my life from a very active one, with a full-time job and a lot of fitness in my spare time to a condition, where I am immobilised in a wheelchair and can work only a few hours a week. Despite the disease casting a shadow over my life, my positive attitude and outlook has made me find a new purpose and meaning in life by helping other people with lupus all across Europe.

Unfortunately, I have been in the hospital a lot for my beginnings on the LUPUS EUROPE board, but hopefully things will change for the better and I will be able to be more active in the near future. For now, my two main focuses in LUPUS EUROPE are on the young lupus patients and communication to our members.”

 

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2 weeks ago

🚨 𝐋𝐚𝐬𝐭 𝐝𝐚𝐲 𝐭𝐨 𝐜𝐨𝐦𝐩𝐥𝐞𝐭𝐞 𝐭𝐡𝐞 𝐬𝐮𝐫𝐯𝐞𝐲❗

📈 In 2020, our "Living with Lupus" survey revealed the significant burden and vast differences in #SLE care across Europe from the patient's perspective.

🔊These findings have become invaluable to lupologists worldwide, shaping how this complex disease is understood and managed.

🎯 The insights from this new survey aim to build on the previous data, helping to refine treatment approaches and care strategies.

‼️ Your participation is crucial in providing a comprehensive view of the current challenges and needs faced by those living with lupus.

✅ The results will not only assist physicians but also inform patients and policymakers, playing a key role in advancing lupus care and advocacy efforts. This is your chance to contribute to a better understanding of lupus and to ensure that care strategies are as effective and tailored as possible.

🕒 Complete this anonymous survey before May 15th and help us capture the diverse experiences of individuals affected by lupus across Europe.

🌐 Available in 21 Languages:

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2 weeks ago

‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; it's an illness that can influence every part of your life.

⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.

✅ That is one of the reasons why you have to complete the "Living with Lupus in 2024" survey: to understand the real-world impact of lupus to be able to advocate for better support, care, and treatment options.

🌟 Your insights are invaluable in shaping effective interventions and enhancing support systems for everyone affected by this complex condition in Europe.

🙏 Don't miss this unique opportunity to advocate for change and push for advancements in how lupus is managed and treated, ensuring that every individual receives the care they deserve.

🔗 Click on this link and select your language: s.surveylegend.com/-Nr54WsZrcnC-4BwDBrG
... See MoreSee Less

‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; its an illness that can influence every part of your life.

⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.

✅ That is one of the reasons why you have to complete the Living with Lupus in 2024 survey: to understand the real-world impact of lupus to be able to advocate for better support, care, and treatment options.

🌟 Your insights are invaluable in shaping effective interventions and enhancing support systems for everyone affected by this complex condition in Europe.

🙏 Dont miss this unique opportunity to advocate for change and push for advancements in how lupus is managed and treated, ensuring that every individual receives the care they deserve.

🔗 Click on this link and select your language: https://s.surveylegend.com/-Nr54WsZrcnC-4BwDBrGImage attachmentImage attachment+1Image attachment
2 weeks ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻 Izpolnite anketo.

🔊 Delite z vašo skupnostjo.

🙏 Help us achieve more answers to ensure the Slovak population is represented in the results

s.surveylegend.com/-Nt-wdNdIqT4v3ptXEM1

#lupusawarenessmonth
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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