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 may have a condition called LED (an old name for Lupus, still used by some doctors in Finland). At the time, it obviously didn’t mean anything to me, I didn’t look it up in a library, but it relupus finlandmained in my memory. Luckily, the antibiotics worked shortly after and I went home to recover.

The following year I was accepted to university to study English Philology, the history of language and culture and linguistics. My first one and a half years as a student were bliss, but then everything changed. I had pneumonia every other year and repeated bouts of bronchitis in between. That made me skip many courses but I was able to finish them later, when I felt better. In January 1993, I was in a middle of my teacher training when a persistent temperature took me to a university hospital for a couple of weeks, where I was diagnosed with Lupus.

Lupus explained the many symptoms I had been having on top of my lung problems. I had achy swollen joints, sun sensitivity, leukopenia, anaemia and red patches on my arms and legs. It was most active for 10 years, during which time I also had pericarditis twice and myocarditis once. Twice, a sudden rise of temperature where I developed pneumonia in a couple of hours and was taken to hospital in an ambulance.

Despite Lupus I had a child in 1995. Thanks to specialised neonatal care, I was able to give a normal birth to a healthy girl, who is now 21 years old. She has had no symptoms, for which I am very grateful.

Looking back now on the active period, the medication seems to have worked and I slowly recovered. I took cortisone for ten years, azathioprine and methotrexate for a while. The latter two didn’t suit me, but I think they did their job anyway, because my Lupus went into remission 12 years ago. In 2004 I was able to stop taking cortisone and my Lupus has remained dormant ever since. I took hydroxychloroquine during the ten active years too, but then stopped taking it. In 2012 I felt my Lupus may be becoming active again and started taking hydroxychloroquine once more. It may have helped and stopped an active disease flare up, who knows?

Although Lupus has been a pain in the butt and has created obstacles in my life and made life a bit more challenging, I have been able to do all I have dreamt of. I finished my studies in the end and took out both BA and MA degrees in English Philology, philosophy and teacher training. I worked for 16 years altogether as an English teacher, then I retrained in accounting and still have a job as an accountant. Another dream that worked out well was to have a child, and that happened too. She is the light of my life.

It seems I was one of the unlucky ones to get Lupus, but having said that, I also feel very lucky that my Lupus is dormant right now. No-one knows how it will go in the end and my Lupus may become active again, but I don’t want to think about that and so I live life one day at a time, doing things that interest me most. Lupus has taught me to be happy about simple things. Lupus has also introduced me to wonderful people around the world that I most probably would never have met. As I see it, having a chronic illness makes one enjoy and respect the good days and make the most of one’s life.

Kikka is a member of Lupus Finland – SLE-yhdistys ry

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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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