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
1 day ago
LUPUS EUROPE

🦋 Living with lupus can feel overwhelming when you're trying to sift through an ocean of information that may or may not be reliable.

🥵 Are you tired of endless searches?
😵‍💫 Do you feel overwhelmed by medical jargon?

🙌 It’s time to try #LupusGPT! Our AI-driven tool is designed to cut through the noise, providing you with trusted, doctor/patient-validated information.

💫 Whether you're a newly diagnosed patient, a long-term one, or a caregiver, #LupusGPT offers the support and knowledge you need to make informed health decisions alongside the invaluable support and guidance of your medical team.

🌍 Plus, with availability in multiple languages, #LupusGPT ensures that high-quality lupus information is accessible to everyone, no matter where you are or what language you speak.

Visit s.mtrbio.com/dkbhqzgrrd now and share this post to help us spread the word. Help us empower more individuals to gain control over their lupus management! ... See MoreSee Less

🦋 Living with lupus can feel overwhelming when youre trying to sift through an ocean of information that may or may not be reliable. 🥵 Are you tired of endless searches? 😵‍💫 Do you feel overwhelmed by medical jargon? 🙌 It’s time to try #LupusGPT! Our AI-driven tool is designed to cut through the noise, providing you with trusted, doctor/patient-validated information. 💫 Whether youre a newly diagnosed patient, a long-term one, or a caregiver, #LupusGPT offers the support and knowledge you need to make informed health decisions alongside the invaluable support and guidance of your medical team. 🌍 Plus, with availability in multiple languages, #LupusGPT ensures that high-quality lupus information is accessible to everyone, no matter where you are or what language you speak. Visit https://s.mtrbio.com/dkbhqzgrrd now and share this post to help us spread the word. Help us empower more individuals to gain control over their lupus management!
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LUPUS EUROPE
5 days ago
LUPUS EUROPE

⁉️ Do you want to know more about diet & #lupus?

✅ Check out the #Lupus100 website, where you can find reliable information about lupus in a patient-friendly language.

🔊 Whether you're looking for tips on living with lupus, treatment options, or understanding lupus better, this website has it all. Plus, it's available in multiple European languages! Making it accessible to a wider audience.

Check it out now! ⬇️

lupus100.org/en/questions/should-we-follow-a-special-diet-in-lupus

🇩🇰 lupus100.org/da/questions/should-we-follow-a-special-diet-in-lupus
🇩🇪 lupus100.org/de/questions/should-we-follow-a-special-diet-in-lupus
🇪🇸 lupus100.org/es/questions/should-we-follow-a-special-diet-in-lupus
🇬🇷 lupus100.org/el/questions/should-we-follow-a-special-diet-in-lupus
🇫🇷 www.rhumatismes.net/index.php?id_q=854
🇮🇹 lupus100.org/it/questions/should-we-follow-a-special-diet-in-lupus
🇱🇹 lupus100.org/lt/questions/should-we-follow-a-special-diet-in-lupus
🇳🇱 lupus100.org/nl/questions/should-we-follow-a-special-diet-in-lupus
🇵🇹 lupus100.org/pt/questions/should-we-follow-a-special-diet-in-lupus
🇷🇴 lupus100.org/ro/questions/should-we-follow-a-special-diet-in-lupus
🇫🇮 lupus100.org/fi/questions/should-we-follow-a-special-diet-in-lupus
🇺🇦 lupus100.org/uk/questions/should-we-follow-a-special-diet-in-lupus
🇷🇺 lupus100.org/ru/questions/should-we-follow-a-special-diet-in-lupus
Catalan: lupus100.org/ca/questions/should-we-follow-a-special-diet-in-lupus ... See MoreSee Less

⁉️ Do you want to know more about diet & #lupus? ✅ Check out the #Lupus100 website, where you can find reliable information about lupus in a patient-friendly language. 🔊 Whether youre looking for tips on living with lupus, treatment options, or understanding lupus better, this website has it all. Plus, its available in multiple European languages! Making it accessible to a wider audience. Check it out now! ⬇️ https://lupus100.org/en/questions/should-we-follow-a-special-diet-in-lupus 🇩🇰 https://lupus100.org/da/questions/should-we-follow-a-special-diet-in-lupus 🇩🇪 https://lupus100.org/de/questions/should-we-follow-a-special-diet-in-lupus 🇪🇸 https://lupus100.org/es/questions/should-we-follow-a-special-diet-in-lupus 🇬🇷 https://lupus100.org/el/questions/should-we-follow-a-special-diet-in-lupus 🇫🇷 https://www.rhumatismes.net/index.php?id_q=854 🇮🇹 https://lupus100.org/it/questions/should-we-follow-a-special-diet-in-lupus 🇱🇹 https://lupus100.org/lt/questions/should-we-follow-a-special-diet-in-lupus 🇳🇱 https://lupus100.org/nl/questions/should-we-follow-a-special-diet-in-lupus 🇵🇹 https://lupus100.org/pt/questions/should-we-follow-a-special-diet-in-lupus 🇷🇴 https://lupus100.org/ro/questions/should-we-follow-a-special-diet-in-lupus 🇫🇮 https://lupus100.org/fi/questions/should-we-follow-a-special-diet-in-lupus 🇺🇦 https://lupus100.org/uk/questions/should-we-follow-a-special-diet-in-lupus 🇷🇺 https://lupus100.org/ru/questions/should-we-follow-a-special-diet-in-lupus Catalan: https://lupus100.org/ca/questions/should-we-follow-a-special-diet-in-lupus
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LUPUS EUROPE
6 days ago
LUPUS EUROPE

✅ Yes! As many of you guessed, the January theme of the #kicklupus campaign is... diet! One of the New Year's resolutions that is among the most commonly chosen by people every year.

🤓 Did you know that a well-balanced diet plays an essential role in the holistic approach to #lupus management🦋? It also helps support overall health and well-being.

🥦 From incorporating the Mediterranean diet🐟 to staying hydrated💧, small dietary changes can greatly impact the lives of those with lupus.

💪 Let's make this a year of health: join us in this challenge!

📸 Share your journey and tips and tricks towards a healthier diet using the hashtag and inspire others to make positive changes too. ... See MoreSee Less

✅ Yes! As many of you guessed, the January theme of the #KickLupus campaign is... diet! One of the New Years resolutions that is among the most commonly chosen by people every year. 🤓 Did you know that a well-balanced diet plays an essential role in the holistic approach to #lupus management🦋? It also helps support overall health and well-being. 🥦 From incorporating the Mediterranean diet🐟 to staying hydrated💧, small dietary changes can greatly impact the lives of those with lupus. 💪 Lets make this a year of health: join us in this challenge! 📸 Share your journey and tips and tricks towards a healthier diet using the hashtag and inspire others to make positive changes too.
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LUPUS EUROPE
1 week ago
LUPUS EUROPE

🛠️ We are currently performing maintenance to enhance your experience with #LupusGPT.

✅ Adjustments & updates are normal and expected.

We appreciate your understanding & support as we fine-tune our tool to better meet your needs. ... See MoreSee Less

🛠️ We are currently performing maintenance to enhance your experience with #LupusGPT. ✅ Adjustments & updates are normal and expected. We appreciate your understanding & support as we fine-tune our tool to better meet your needs.
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I come from a Pacific Island nation called Papua New Guinea. My country shares borders with Indonesia, Australia, and the Solomon Islands. I usually search on YouTube for interesting documentaries. Whilst looking up YouTube videos, I came across a documentary on people who suffer from SLE Lupus disease and their real treatment from www. multivitamincare .org. I had never heard of this crippling and debilitating disease affecting a lot of American Europeans. It is very tortuous to watch and hear patients who suffer. It is more like a combination of various diseases all put into one. Like a person who has suffered a stroke, plus someone suddenly becoming paralyzed, Parkinson's disease, COPD, ALS, cancer, etc., but I also get to understand that there has been a successful cure for this disease from www. multivitamin care. org It is too much for a patient to endure, such as they slowly begin to pass away if the right medication is not taken . Having a positive mind is a powerful tool . My prayers go out to Lupus patients and their caregivers.