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When I got my lupus diagnosis in 2011 I was a very active young woman with a teaching job and on my way to study for a PHD at Aarhus university. I have a master’s degree in German and Philosophy and I loved teaching. I used to be a fitness instructor during my studies and keeping in shape meant a great deal to me and my well being.

I have had many symptoms of lupus from as far back as the year 2000, but I never thought to connect all the elusive symptoms like hair loss, joint pains, headaches, fatigue and depression in one disease. My husband and I were on our honeymoon in Bali when I got my first real flare.

We had planned a guided tour around the island but after a few days I started having fewer. The fewer went up and down a lot, but since it was my only symptom and there was no doctor nearby, we went on with the tour. After four or five days I had the opportunity to see a doctor and he took a blood test and gave me antibiotics. There are no laboratories on Bali, so the blood test had to be sent to Java for analysis, which takes four to five days. While waiting for the results I suddenly one evening had difficulty breathing and my chest started hurting. I was rushed to the emergency clinic, which consisted of a small open room with chairs and tables for examination. It was mostly used for the many motorbike accidents with scrapes and bruises and did not have the equipment nor the space for a patient like me. They thought I had an asthma attack or maybe a lung infection, so they treated me with a nebulizer and antibiotics in IV, which did not help at all. I got worse and worse and was brought to a larger hospital in Denpasar, the capital of Bali. They took x-rays of my lungs and saw I had an infection, which they treated with more antibiotics. This did not help at all, however, and I got to the point where I passed out and was brought to intensive care. I was hooked up to a lot of machines, which monitored my vitals and alarms kept going off because my body was giving up. My attending doctor was convinced I had a bad pneumonia and just needed more antibiotics, then I would get better. From my wedding day I had had a horrendous headache and this only got worse while I was in hospital. Some very nice nurses noticed this and called in a neurologist to have a look at me. She was the first one to really have a good look at my body and she noticed I had rashes on my legs, arms, chest and face and she had an idea, what it might be, but didn´t tell us. She performed a brain scan and called a rheumatologist and he had one look at me and told my poor husband: “Your wife has lupus”. Of cause he had to take tests to be sure, but he was so convinced he was right, that he started me up in 1000 mg. of corticoid steroids. After only two hours my body started to respond to the medication and the vital signs very slowly returned to normal. My husband did not believe, that this serious episode could be caused by arthritis, but he borrowed a computer, went online to the Danish arthritis association’s home page and read about lupus and suddenly all my symptoms from the past 11 years made sense. While I was recovering new tests were made and they all confirmed, that I had lupus. It manifested itself in my lungs, my heart, my brain and my central nervous system. After two weeks’ time I was so stable, that I could travel back home.

My lupus has turned out to be quite aggressive, partly because of my late diagnosis, and today the illness combined with side-effects from the medication has left me walking-impaired and a lot heavier than before. I am no longer able to work-out like I used to and a chronic headache alternating with migraines means I am no longer able to work. Since I still have my good education and I really needed to do something meaningful in my everyday life, I started as a volunteer in the Danish lupus association in 2012. I found such satisfaction in this work, that I have taken on more and more work since then. In 2014 I became a working group member of EULAR Young PARE and last year I was elected into the LUPUS EUROPE board. By volunteering for these organisations, I have the opportunity to help other people with an RMD, while still taking care of my own disease by only working, when I have the health and energy for it.

Although SLE has changed my life from a very active one, with a fulltime 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, I have found a new purpose and meaning in life, by helping other people with RMDs all across Europe.

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3 days ago

🏋️‍♀️🩺 In a previous post, we discussed the significant benefits of physical activity (PA) for individuals living with lupus.

🤓 Today, let's delve deeper into the importance of PA and its relationship with this autoimmune disease.

The World Health Organization (WHO) defines physical activity as any bodily movement that requires energy expenditure, encompassing more than just sports – it includes daily activities like walking🚶‍♂️or cycling 🚴‍♀️ to work 🏢 and opting for stairs over elevators.

📝 The WHO has established specific recommendations for the amount of PA needed for each age group, that we have included in the images for your information.

❌ However, according to a study led by Blaess J, Arnaud L et al., 𝗼𝗻𝗹𝘆 11% 𝘁𝗼 29.8% 𝗼𝗳 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝘄𝗶𝘁𝗵 𝗹𝘂𝗽𝘂𝘀 𝗺𝗲𝗲𝘁 𝘁𝗵𝗲𝘀𝗲 𝗿𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗲𝗱 𝗹𝗲𝘃𝗲𝗹𝘀 😲.

Remarkably, the same study revealed that aerobic programs had notable benefits in individuals with lupus :

⬆️ Global aerobic capacity.
⬇️ Cardiovascular risk.

While resistance training programs:

⬆️ Enhanced strength and overall function.

✅ Additionally, participants experienced:

⬇️ Fatigue.
⬇️ Depression.
⬆️ Health-related quality of life following PA training

✅ Both aerobic and resistance training programs were well tolerated in SLE patients with stable disease and no severe adverse events were reported in the study. 💪😊

Despite the obstacles that lupus patients may face, such as pain, fatigue, and mental health issues, there's great news on the horizon. Lupus Europe, through the #kicklupus challenge, is dedicated to overcoming these hurdles with a tailored exercise program designed to accommodate those with mobility limitations. You can join for free, from the comfort of your home, at your preferred time, and the best part – no equipment is required!

🌟🙌 Let's embark on this journey together towards better health and well-being.

For more information, follow the link below and don't forget to share your progress and motivate each other with the hashtag #kicklupus. 📷💪

Let's kick lupus together! 👊🦋

www.lupus-europe.org/me-lupus/
... See MoreSee Less

🏋️‍♀️🩺 In a previous post, we discussed the significant benefits of physical activity (PA) for individuals living with lupus.

🤓 Today, lets delve deeper into the importance of PA and its relationship with this autoimmune disease.

The World Health Organization (WHO) defines physical activity as any bodily movement that requires energy expenditure, encompassing more than just sports – it includes daily activities like walking🚶‍♂️or cycling 🚴‍♀️ to work 🏢 and opting for stairs over elevators.

📝 The WHO has established specific recommendations for the amount of PA needed for each age group, that we have included in the images for your information.

❌ However, according to a study led by Blaess J, Arnaud L et al., 𝗼𝗻𝗹𝘆 11% 𝘁𝗼 29.8% 𝗼𝗳 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝘄𝗶𝘁𝗵 𝗹𝘂𝗽𝘂𝘀 𝗺𝗲𝗲𝘁 𝘁𝗵𝗲𝘀𝗲 𝗿𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗲𝗱 𝗹𝗲𝘃𝗲𝗹𝘀 😲.

Remarkably, the same study revealed that aerobic programs had notable benefits in individuals with lupus :

⬆️ Global aerobic capacity.
⬇️ Cardiovascular risk.

While resistance training programs:

⬆️ Enhanced strength and overall function.

✅ Additionally, participants experienced:

⬇️ Fatigue.
⬇️ Depression.
⬆️ Health-related quality of life following PA training

✅ Both aerobic and resistance training programs were well tolerated in SLE patients with stable disease and no severe adverse events were reported in the study. 💪😊

Despite the obstacles that lupus patients may face, such as pain, fatigue, and mental health issues, theres great news on the horizon. Lupus Europe, through the #KickLupus challenge, is dedicated to overcoming these hurdles with a tailored exercise program designed to accommodate those with mobility limitations. You can join for free, from the comfort of your home, at your preferred time, and the best part – no equipment is required!

🌟🙌 Lets embark on this journey together towards better health and well-being.

For more information, follow the link below and dont forget to share your progress and motivate each other with the hashtag #KickLupus. 📷💪

Lets kick lupus together! 👊🦋

https://www.lupus-europe.org/me-lupus/Image attachmentImage attachment+3Image attachment
5 days ago

🎥 What makes #LupusGPT different? Watch this video to find out!

🌟 Unlike other AI tools, #𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧 𝗴𝘂𝗮𝗿𝗮𝗻𝘁𝗲𝗲𝘀 𝗮𝗰𝗰𝘂𝗿𝗮𝗰𝘆 𝗮𝗻𝗱 𝘁𝗿𝗮𝗻𝘀𝗽𝗮𝗿𝗲𝗻𝗰𝘆. Here’s how:

✅ Every response is based on a 𝗿𝗶𝗴𝗼𝗿𝗼𝘂𝘀𝗹𝘆 𝗰𝘂𝗿𝗮𝘁𝗲𝗱 𝗿𝗲𝗽𝗼𝘀𝗶𝘁𝗼𝗿𝘆 𝗼𝗳 𝘀𝗰𝗶𝗲𝗻𝘁𝗶𝗳𝗶𝗰 𝗱𝗼𝗰𝘂𝗺𝗲𝗻𝘁𝘀, including the latest EULAR recommendations and the #Lupus100 website.

#𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧 𝘄𝗶𝗹𝗹 not 𝗺𝗮𝗸𝗲 𝘂𝗽 𝗮𝗻𝘀𝘄𝗲𝗿s. If the information isn’t available in its database, it will honestly let you know.

🔍 Our database is regularly updated with verified information to expand its knowledge and utility.

🤖 Challenge #LupusGPT with your toughest lupus questions and experience its precision and accuracy, and let us know your thoughts. Your feedback is very valuable to us!

Visit now s.mtrbio.com/rftoeqgutq and get 🤯 by this amazing tool.

And remember! Although #LupusGPT is designed to provide valid information and be a valuable resource, 𝗻𝗼 𝘁𝗼𝗼𝗹 𝗰𝗮𝗻 𝗿𝗲𝗽𝗹𝗮𝗰𝗲 𝘆𝗼𝘂𝗿 𝗽𝗵𝘆𝘀𝗶𝗰𝗶𝗮𝗻.
... See MoreSee Less

1 week ago

👋 Welcome February!

We hope you all are ready for action! 💪

🎯 One of our goals is to help you #kicklupus, and we are going to do it together! 😃

👉 If you...

Have lupus
Love someone with lupus
Or treat someone with lupus...

... stay tuned! 🙌

This month, we are focusing on a powerful tool that can make a difference in lupus: EXERCISE!💪

📸 Whether it's a gentle stroll, a 🧘‍♀️session, or any other activity, let's motivate each other by sharing pictures of our workouts with #kicklupus
... See MoreSee Less

👋 Welcome February!

We hope you all are ready for action! 💪

🎯 One of our goals is to help you #KickLupus, and we are going to do it together! 😃

👉 If you...

Have lupus
Love someone with lupus
Or treat someone with lupus...

... stay tuned! 🙌

This month, we are focusing on a powerful tool that can make a difference in lupus: EXERCISE!💪

📸 Whether its a gentle stroll, a 🧘‍♀️session, or any other activity, lets motivate each other by sharing pictures of our workouts with #KickLupusImage attachmentImage attachment
1 week ago

🙌 January is coming to an end!

🛣️ Throughout this first month of the year, we've discussed how to #kicklupus with the power of a balanced diet.

🥗 In a recent post, we highlighted that the Mediterranean diet stands out as the only one scientifically proven to be beneficial for lupus.

📚 This week, we're diving deep into the groundbreaking study conducted by Gabriela Pocovi-Gerardino and colleagues, published in the Rheumatology journal in 2021, that demonstrates that the Mediterranean diet has a positive impact on lupus activity, cumulative damage, and cardiovascular risk.

🔴 The results of this study indicate that patients with higher adherence to the Mediterranean diet exhibited improved:

✅ Improved anthropometric profiles (body mass index, percentage of fat)

✅ Better levels of cardiovascular risk markers in the blood

✅ Enhanced levels of certain inflammatory biomarkers (including C-reactive protein, homocysteine, triglycerides, and albumin).

🔵 Another noteworthy conclusion from this study is that the consumption of specific components of the Mediterranean diet (olive oil, fruits, vegetables, sofrito, legumes, fish, and nuts), along with the avoidance of red meats and industrial products rich in sugars, is associated with a 𝗹𝗼𝘄𝗲𝗿 𝗹𝗲𝘃𝗲𝗹 𝗼𝗳 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝗱 𝗯𝘆 𝘁𝗵𝗲 𝗦𝗟𝗘𝗗𝗔𝗜 𝗶𝗻𝗱𝗲𝘅.

🦋 It is crucial to emphasise that achieving a SLEDAI score of zero is one of the requirements for lupus remission, as per the recent definition by the DORIS group.

🟣 Despite the study's limitations, the authors conclude that increased adherence to the Mediterranean diet has a positive impact on:

✅ Lupus activity.
✅ Cumulative damage.
✅ Cardiovascular risk.

Your journey to a healthier, empowered life begins now!

👩‍⚕️ Remember: if you need guidance regarding nutrition or diet, it's crucial to consult with your doctor and seek advice from a qualified dietitian-nutritionist.

👂 Stay tuned for our next challenge!
... See MoreSee Less

🙌 January is coming to an end!

🛣️ Throughout this first month of the year, weve discussed how to #KickLupus with the power of a balanced diet.

🥗 In a recent post, we highlighted that the Mediterranean diet stands out as the only one scientifically proven to be beneficial for lupus.

📚 This week, were diving deep into the groundbreaking study conducted by Gabriela Pocovi-Gerardino and colleagues, published in the Rheumatology journal in 2021, that demonstrates that the Mediterranean diet has a positive impact on lupus activity, cumulative damage, and cardiovascular risk.

🔴 The results of this study indicate that patients with higher adherence to the Mediterranean diet exhibited improved:

✅ Improved anthropometric profiles (body mass index, percentage of fat)

✅ Better levels of cardiovascular risk markers in the blood

✅ Enhanced levels of certain inflammatory biomarkers (including C-reactive protein, homocysteine, triglycerides, and albumin).

🔵 Another noteworthy conclusion from this study is that the consumption of specific components of the Mediterranean diet (olive oil, fruits, vegetables, sofrito, legumes, fish, and nuts), along with the avoidance of red meats and industrial products rich in sugars, is associated with a 𝗹𝗼𝘄𝗲𝗿 𝗹𝗲𝘃𝗲𝗹 𝗼𝗳 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝗱 𝗯𝘆 𝘁𝗵𝗲 𝗦𝗟𝗘𝗗𝗔𝗜 𝗶𝗻𝗱𝗲𝘅.

🦋 It is crucial to emphasise that achieving a SLEDAI score of zero is one of the requirements for lupus remission, as per the recent definition by the DORIS group.

🟣 Despite the studys limitations, the authors conclude that increased adherence to the Mediterranean diet has a positive impact on:

✅ Lupus activity.
✅ Cumulative damage.
✅ Cardiovascular risk.

Your journey to a healthier, empowered life begins now!

👩‍⚕️ Remember: if you need guidance regarding nutrition or diet, its crucial to consult with your doctor and seek advice from a qualified dietitian-nutritionist.

👂 Stay tuned for our next challenge!Image attachmentImage attachment
LUPUS EUROPE Uniting people with Lupus throughout Europe
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