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 […]

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: […]

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 […]

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 […]

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 […]

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 […]

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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2 days ago

🦋 #WorldLupusDay is coming to an end!

❤️ Thank you all for the support you have shown throughout this important day in which the whole world has raised awareness of the impact that lupus can potentially have 💥.

🌈 However, we at Lupus Europe believe that there is something very important that we also need to show the world: our vitality, our energy, and our will to enjoy life – including our work.

🌟 Our strong vision in a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.

😃 We always work hard! We all have lupus, though our amazing Lupus Europe family seems to forget about it when we are at an event, a meeting, or are working for the organisation.

🦋 Lupus is an invisible illness with many faces. Let’s close this day with our hopes, our laughter, and our enthusiasm for life.

🌺 Every day, but especially this # WorldLupusDay, we thank all those who stand by our side and show the best face of the 1000 faces lupus has.
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2 days ago

‼️ It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLE's most dangerous & frequent complications.

💊 Routine checkups and available treatments make it possible for 60–70% of patients to achieve complete or partial remission.

#WorldLupusDay
#Lupus100
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‼️ It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLEs most dangerous & frequent complications.

💊 Routine checkups and available treatments make it possible for 60–70% of patients to achieve complete or partial remission.

#WorldLupusDay
#Lupus100
2 days ago

🔴 Despite significant improvements in diagnosis delay & treatment strategies, the burden of #SLE remains high.

Learn more on the association between diagnosis delay, disease activity and burden on daily life in patients with #lupus in this study: lupus.bmj.com/content/8/1/e000469

And get to better understand how to live with #lupus thanks to #Lupus100! A website written by doctors and patients to make it possible for people with lupus to have easy-to-understand and high-quality information about lupus!

lupus100.org/en/100-questions#Challenges

Need more? Check out #LupusGPT! lupusgpt.org/

#WorldLupusDay
#Lupus100
... See MoreSee Less

🔴 Despite significant improvements in diagnosis delay & treatment strategies, the burden of #SLE remains high.

Learn more on the association between diagnosis delay, disease activity and burden on daily life in patients with #lupus in this study: https://lupus.bmj.com/content/8/1/e000469

And get to better understand how to live with #lupus thanks to #Lupus100! A website written by doctors and patients to make it possible for people with lupus to have easy-to-understand and high-quality information about lupus!

https://lupus100.org/en/100-questions#Challenges

Need more? Check out #LupusGPT! https://lupusgpt.org/

#WorldLupusDay
#Lupus100
2 days ago

🚨 #lupus is an autoimmune disease that affects nearly 500,000 people in Europe and over 5 million people in the world.

It affects not only patients but also their loved ones.

Do you want to know what the first symptoms of #lupus are?

Visit #Lupus100 and #lupusgpt and find out!

Getting to know the disease is key for an early diagnosis.

lupus100.org/en/questions/what-are-the-first-signs-of-lupus

lupusgpt.org/

#WorldLupusDay
#MakeLupusVisible
... See MoreSee Less

🚨 #Lupus is an autoimmune disease that affects nearly 500,000 people in Europe and over 5 million people in the world.

It affects not only patients but also their loved ones.

Do you want to know what the first symptoms of #lupus are?

Visit #Lupus100 and #LupusGPT and find out!

Getting to know the disease is key for an early diagnosis.

https://lupus100.org/en/questions/what-are-the-first-signs-of-lupus

https://lupusgpt.org/

#WorldLupusDay
#MakeLupusVisible