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 the Kick Lupus panel had a hard time choosing who should win but we are delighted to say that our winner is Sara Woods from the UK.

In addition to her beautiful piece of art, Sarah has written a text with her story and a poem. We are so glad she was able to come to the convention and share her personal story with us. We are sure that her artwork and words will resonate with many of you.

 

 

Here is what Sarah had to say…

I think in order to fully understand my cloud you need to hear my own personal Lupus story which begins before I was even born.

In the late 1970’s my grandfather, Arthur was diagnosed with Systemic Lupus Erythematosus (SLE). Due to the lack of knowledge about Lupus at the time, my grandfather was diagnosed when he was in the later stages of the disease. He was asked to attend Doctors lectures in order to help spread awareness and knowledge of the disease so I know he wouldn’t mind me speaking of him to you today.

Sadly my grandfather passed away in 1980, only a few years after he was diagnosed, due to complications associated with Lupus, leaving behind two daughters (one of which is my mum) and a wife – he was only 53 years old.

I was born 18 months later. Though I never knew my grandfather I grew up being fully aware of the massive void his death had left in the family.

Fast forward 15 years or so and we think I first became unwell with SLE in my late teenage years. I would feel fatigued, achy, run down, would experience a swollen, ulcerated mouth and regular ear infections.

Despite visiting my GP and dentist multiple times in an attempt to get to the bottom of my symptoms, and mentioning on numerous occasions that there was a family history of Lupus, I wasn’t properly listened to and so consequently didn’t get a confirmed diagnosis until earlier this year when I attended a GP appointment armed with a lot of research which I believed pointed to Lupus – I was correct.

I have been receiving treatment for my Lupus since May this year and I am already feeling so much better in myself. I am managing to work full time an NHS Mental Health Nurse, whilst also being able to cope with caring for my 3 children – all of which was becoming a near impossible daily challenge for me before my diagnosis.

So for me having a diagnosis has been life changing. Yes, it has been a blow for the family to find out that I also have the same condition as my grandfather, but at least I am getting some level of normality back in my life due to adequate symptom control after battling on and on with the symptoms for so many years.

Sadly I am well aware that I am far from unique when it comes to getting a timely diagnosis and appropriate treatment. I feel that in order to truly ‘Kick Lupus’ this needs to be addressed, hence my decision to spend time earlier this year when I was off work recovering from a Lupus flare creating my word cloud.

I have always been a creative person and I actually use art as a tool to help people with mental health problems in my place of work. I enjoy drawing, writing and music as I believe they all hold therapeutic elements that can promote healing – this word cloud certainly became part of my own healing process when I crated it.

I chose the theme of a tree to ‘Kick Lupus’ as it promotes the notion of growth, life and renewal. Trees also have strong roots to ground them and to provide stability as well as the need to be well fed and nurtured with its many networks in order to develop well and thrive. I think all of these elements mirror the humanistic requirements that are needed to help someone who has a diagnosis of Lupus.

I designed the tree to deliberately shape into a heart with no beginning or end so that each element within the tree becomes connected and dependent on the next in order to thrive no matter how big or small.

I deliberately coloured the head of the tree person in a blue shade as I personally could often feel quite ‘blue’ in my mood and I feel that adequate mental health resource is essential to ‘Kicking Lupus’.

The idea that the tree person is placed within the shade of the leaves of the tree comes from the notion that due to my photosensitivity I seem to spend a great deal of time under the protective shade of these gentle giants. I have attempted to make the tree person sexless as I feel that at times males can be underrepresented with regards to Lupus.

I added a subtle piece of my grandfather to the tree as well – the texture on the leaves was created by rubbing a pencil over an embossed stamp on the cover of one of his old books that has been passed on to me, so my grandfather is effectively helping to protect me within the leaves.

All the words within the tree have been strategically placed so that they have meaning that relates not only to the tree but also to the placement within the tree and it’s ultimate aim to ‘Kicking Lupus’.

When developing this tree I was all too aware of the fact that on the outside for many years I looked like a fit, health young woman I wasn’t properly seen or heard by health care professionals, this led to a significant delay in diagnosis and prolonged suffering, so I have included the words ‘see’, ‘listen’ and ’believe’ for this reason. I have also written a poem about what this can feel like which I would like to share with you…

 

The Butterfly and The Hurricane

Look how she glows! Colours radiating!

Wings proudly displaying a lifetime of scars from unspoken wars,

they mingle within her unique design and become one.

 

See how she flies! She’s at the prime of her life!

Spreading her wings and sharing her finds – she’s divine!

 

All too soon, war resumes, her battle persists.

Into the dark and out of control,

she clashes with forces that refuse to desist.

 

To see her she’s dancing, it’s glorious to see,

but inside she’s fighting what can never be seen.

People pass comment on this beautiful sight,

never really seeing her personal plight.

 

Out in the open she sees other’s around,

dancing the same dance on this twisted merry-go-round.

Beautifully unique, yet tragically the same,

all caught within this cruel hurricane.

 

At times it’s power slows and her confidence grows,

she begins to believe she can fly without its control.

She tries to mend….but all too soon that familiar trend,

the vortex that consumes returns.

 

And so her beautiful, silent, war-dance continues,

looked upon by many, yet truly seen by few.

 

 

 

 

 

 

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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
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