Category: Stories

Kick Lupus word cloud competition winner!

The LUPUS EUROPE 2018 convention is underway in Leuven, Belgium and among the serious speeches on medical and psychological topics, we were delighted to be presented the beautiful (and very creative) word cloud entries in the Kick Lupus competition. All in all there were 35 entries to the competition, a great response! The judges on […]

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A mother’s story

For World Lupus Day, Anne Charlet, vice chair of LUPUS EUROPE, was interviewed by MedTech. When Anne Charlet’s teenage daughter complained of extreme fatigue, she thought it was just end-of-school year tiredness or anaemia. But a precautionary blood test that revealed an unusually low platelet count led to a completely unexpected diagnosis several months later: […]

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Kikka’s story

My Lupus story doesn’t start in 1993 with an SLE diagnosis, but eight years earlier in 1985, when at the age of 22 I got pneumonia for the first time. O spent two weeks in hospital with a horde of doctors around my bed wondering why antibiotics weren’t working. The oldest doctor mentioned that I […]

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Katharine’s story

When it was first suggested that I write a patient story for Lupus Europe, I have to say that I felt a little uncomfortable. Firstly, I’m an intensely private person and have so far never wanted to write about myself or write a blog. Secondly my ‘lupus’ is relatively mild (in the medical sense rather […]

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Anna’s story

I met my Lupus on a sunny day of April 2003 when I was 23 years old. A year ago, I was hospitalized because I fainted with seizures. At the time, the doctors told me that anyone can have such episodes once or twice during their life. However, a neurologist in training thought that I was […]

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Yvonne’s story

  My story – by Yvonne from the Netherlands On 6 July 2004, I woke up with a tremendous pain in my right hand. Because I also had a slight rash, my GP immediately referred me to a dermatologist. He examined me and referred me to a rheumatologist because he had a hunch what might be […]

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Claudine’s story

For World Lupus Day, we have collected a few patient stories which we hope you will enjoy. If you have a story to tell, feel free to get in touch and send your story to katharine@lupus-europe.org! All stories will remain visible on this page of the blog. My life with lupus – living to the […]

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LUPUS EUROPE
5 hours ago
LUPUS EUROPE

✅ Yes! As many of you guessed, the October theme of the #kicklupus campaign is... vaccines!

💉 Vaccination is a crucial topic, especially for individuals dealing with lupus, as lupus has been proven to make people more susceptible to infections and complications. Therefore, promoting vaccination is paramount in the care and overall well-being of people with lupus.

🛡️ Vaccines play a vital role in bolstering the immune response against various diseases, reducing the risk of infections and their potential severity. For individuals with lupus, getting vaccinated can be a game-changer, providing added protection against infections that could be especially challenging for their immune systems.

Join us in the #kicklupus challenge! Share how you prevent infections in lupus. Your experiences and insights are valuable in creating a supportive community and raising awareness about the importance of proactive measures in managing lupus effectively.

Together, we can make a difference! 💜

💎 In line with our commitment to spreading awareness and information, we invite you to explore the importance of vaccination in patients with lupus through the #Lupus100 website. This initiative offers resources and educational materials in multiple European languages, facilitating access to critical information about lupus and vaccinations ⤵️

lupus100.org/en/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus

Remember you can also check on #lupusgpt in your preferred language! lupusgpt.org/

🇩🇰 lupus100.org/da/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇩🇪 lupus100.org/de/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇪🇸 lupus100.org/es/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇬🇷 lupus100.org/el/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇷 www.rhumatismes.net/index.php?id_q=863
🇮🇹 lupus100.org/it/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇳🇱 lupus100.org/nl/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇴 lupus100.org/ro/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇮 lupus100.org/fi/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇺🇦 lupus100.org/uk/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇺 lupus100.org/ru/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus ... See MoreSee Less

✅ Yes! As many of you guessed, the October theme of the #KickLupus campaign is... vaccines! 💉 Vaccination is a crucial topic, especially for individuals dealing with lupus, as lupus has been proven to make people more susceptible to infections and complications. Therefore, promoting vaccination is paramount in the care and overall well-being of people with lupus. 🛡️ Vaccines play a vital role in bolstering the immune response against various diseases, reducing the risk of infections and their potential severity. For individuals with lupus, getting vaccinated can be a game-changer, providing added protection against infections that could be especially challenging for their immune systems. Join us in the #KickLupus challenge! Share how you prevent infections in lupus. Your experiences and insights are valuable in creating a supportive community and raising awareness about the importance of proactive measures in managing lupus effectively. Together, we can make a difference! 💜 💎 In line with our commitment to spreading awareness and information, we invite you to explore the importance of vaccination in patients with lupus through the #Lupus100 website. This initiative offers resources and educational materials in multiple European languages, facilitating access to critical information about lupus and vaccinations ⤵️ https://lupus100.org/en/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus Remember you can also check on #LupusGPT in your preferred language! https://lupusgpt.org/ 🇩🇰 https://lupus100.org/da/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇩🇪 https://lupus100.org/de/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇪🇸 https://lupus100.org/es/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇬🇷 https://lupus100.org/el/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇫🇷 https://www.rhumatismes.net/index.php?id_q=863 🇮🇹 https://lupus100.org/it/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇳🇱 https://lupus100.org/nl/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇷🇴 https://lupus100.org/ro/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇫🇮 https://lupus100.org/fi/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇺🇦 https://lupus100.org/uk/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇷🇺 https://lupus100.org/ru/questions/how-should-you-manage-your-vaccinations-when-you-have-lupusImage attachmentImage attachment+7Image attachment
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Got the Covid vaccin last week, Saturday the flu vaccin. #kicklupus

LUPUS EUROPE
4 days ago
LUPUS EUROPE

🤩 We are thrilled to see our Chair, Jeanette Andersen, hosting the latest EULAR PARE podcast!

🎙️ In this episode, Jeanette speaks with Gonzalo Tobar, a representative of Asopan and Agrupación Lupus Chile, who shares valuable insights into the challenges faced by people living with #RMDs in South America, highlighting the unequal access to healthcare and the inspiring work of patient organisations.

🦋 At Lupus Europe, we are well aware that inequities can be major barriers affecting the quality of life and health outcomes of #Lupus patients, not only in South America but also in Europe.

📊 This issue is so significant that it has been included in our strategic plan for 2025, and we will soon share more about our efforts to understand it better.

🌟 Don't miss out on this powerful discussion on how communities are overcoming barriers to care.

open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr ... See MoreSee Less

🤩 We are thrilled to see our Chair, Jeanette Andersen, hosting the latest EULAR PARE podcast! 🎙️ In this episode, Jeanette speaks with Gonzalo Tobar, a representative of Asopan and Agrupación Lupus Chile, who shares valuable insights into the challenges faced by people living with #RMDs in South America, highlighting the unequal access to healthcare and the inspiring work of patient organisations. 🦋 At Lupus Europe, we are well aware that inequities can be major barriers affecting the quality of life and health outcomes of #lupus patients, not only in South America but also in Europe. 📊 This issue is so significant that it has been included in our strategic plan for 2025, and we will soon share more about our efforts to understand it better. 🌟 Dont miss out on this powerful discussion on how communities are overcoming barriers to care. https://open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr
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  • likes 14
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LUPUS EUROPE
6 days ago
LUPUS EUROPE

🍂 Welcome October, welcome new #kicklupus challenge!

🤔Can you guess our October theme based on this sneak peek image?

👀 Stay tuned because this month, we're unveiling a powerful way to fortify our health! ... See MoreSee Less

🍂 Welcome October, welcome new #KickLupus challenge! 🤔Can you guess our October theme based on this sneak peek image? 👀 Stay tuned because this month, were unveiling a powerful way to fortify our health!
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3 CommentsComment on Facebook

Thank you! Great moment indeed.

Stop smoking

I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.

LUPUS EUROPE
1 week ago
LUPUS EUROPE

🔴 People with #Lupus are twice as likely to develop cardiovascular disease as healthy people.

👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ ard.bmj.com/content/81/6/768

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #Lupus.

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Don't smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

#WorldHeartDay ... See MoreSee Less

🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people. 👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ https://ard.bmj.com/content/81/6/768 🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #lupus. 1️⃣ Always talk to your physician about preventive measures. 2️⃣ Work to minimise risk factors ⤵️ - Dont smoke🚭 - Practise exercise🏃‍♂️ - Have a healthy diet🍏 #WorldHeartDayImage attachment
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I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.