First of all we would like to say a huge “thank you” to Lupus Europe for supporting us financially with the organisation of this meeting. It went great and both: the patients and us, the board of Lupus Poland, really needed it to meet in real life – most of us had never met before outside of the online reality.

 

The meeting of Lupus Poland was organised on the 27th of June 2021 in Gdańsk and it was a result of the need expressed on one of our groups on Facebook by a person living with lupus. We, Lupus Poland, have taken this opportunity and organised it, in order to connect everybody and to create a network of patients, who can support each other.

 

The meeting was smaller than we expected, as several people cancelled at the last moment for various reasons (health, environmental, weather, distance, etc.). However, this also had a positive side, because all of us could open easier and had enough time to share our stories. We were in total with 7 people and the meeting still lasted for 4,5 hours, with constant talking. It felt like we could have been there forever. We noticed that the entire group really needs these kinds of meetings to be able to talk about their worries, about their experiences, and to get to know more about the disease from others.

 

During the meeting, we shared our stories about the diagnosis, difficulties with the disease, life with lupus and obstacles we are dealing with everyday. We have talked about what we need to change in Poland regarding the path to the diagnosis, what to improve and what is necessary for patients to have the best healthcare possible and variety of treatments available. Next of all, we talked about our achievements, passions, hobbies and positive things, which make us feel alive and happy, despite the obstacles of the disease. We have finalised the meeting by sharing our contacts and by creating a first support group in Poland for people living with lupus. As a result of the meeting, we created the 1st support group for now in Gdańsk. We wish to create more groups like this in various polish cities to enable everybody to be able to join F2F meetings.

 

 

We understand the importance of it and we want to continue our task to support Polish patients. We know that it is also just the beginning of the activity of Lupus Poland and various support groups. We have plenty of ideas and we are looking forward to developing our future projects.

 

Lupus Poland Board meeting

Already on the following day (28th of June) the Board of Lupus Poland met to continue working on our projects and develop further our ideas, which the group collected on the previous day. We (Magdalena Misuno, Klaudia Kępa and Magdalena Sławińska) have worked for another several hours in order to continue creating our strategy and action plan for the next few years. The main activities, which we are planning to do till the end of 2020, are:

  • to actively participate in the Lupus Europe convention and to bring the information gained and lessons learnt from international experts to our national context
  • to organise two more webinars on the clinical trials, and perhaps on pregnancy in Lupus patients,
  • to continue with regular meetings of the support group in Gdansk,
  • to research, in which cities in Poland we could organise similar meetings and create support groups as well,
  • to engage into creation of various informative articles and translation projects,
  • And finally to develop our communication team, keep our social media active and to create our website.

 

Moreover, we already have plenty of ideas for the next few years, for instance, we would like to organise a big meeting (assembly) for people living with Lupus in the entire Poland. For this event we would like to invite specialists and experts to talk about the diagnosis, living with Lupus, treatment options, etc. We are also planning to create a project with psychological support for those in need, to organise online workshops on various topics (relaxation, dietary, exercising), as well as, to create an informational database and a blog on our website with Lupus resources and contacts to relevant clinics. We gathered a lot of ideas for future webinars, articles and workshops and we would like to start a project, which was proposed by one of our volunteers (Anna) – Lupus Cafe – which would be an online support group with regular meetings, where patients could share their thoughts with a cup of tea or coffee. Finally, one of our biggest plans is to open a physical office in Gdansk, where we can hold various meetings, connect with partners and patients.

Article by Klaudia Kępa for Lupus Poland 

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2 hours ago

😨 Did you miss our #EULAR2025 debrief webinar?

😮‍💨 Don't worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page!

www.facebook.com/LupusEurope/videos/1257813502412444
... See MoreSee Less

😨 Did you miss our #EULAR2025 debrief webinar?

😮‍💨 Dont worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page!

https://www.facebook.com/LupusEurope/videos/1257813502412444
3 days ago

‼️ According to our "Living with Lupus in 2020" survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus.

😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many.

💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples:

🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms.

The need to stay covered and protected from the sun can make these jobs particularly challenging.

🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus.

Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection.

This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment.

For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities.

🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun.

😊 Share your experiences and how you #KickLupus & UV light in your daily life
... See MoreSee Less

‼️ According to our Living with Lupus in 2020 survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus. 

😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many.

💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples:

🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms. 

The need to stay covered and protected from the sun can make these jobs particularly challenging.

🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus. 

Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection. 

This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment. 

For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities. 

🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun. 

😊 Share your experiences and how you #KickLupus & UV light in your daily lifeImage attachment
6 days ago

🟣 Phase 2 of LUPUS-ALERT is now complete!

Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care.

🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management:

🔷 Associated conditions
🔷 Comorbidities
🔷 Social and economic context
🔷 Challenges and barriers — like language, access to medication, or distance to care

🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care.

💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process!

📌 Stay tuned — more to come soon!
... See MoreSee Less

🟣 Phase 2 of LUPUS-ALERT is now complete!

Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care.

🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management:

🔷 Associated conditions
🔷 Comorbidities
🔷 Social and economic context
🔷 Challenges and barriers — like language, access to medication, or distance to care

🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care.

💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process!

📌 Stay tuned — more to come soon!
1 week ago

🌟Thank you to all who attended our #EULAR2025 debrief webinar!

🙌 Especially to our presenters, volunteers & PAN members who shared their insights & experiences.

Stay tuned for more news and updates & don't forget to subscribe to our newsletter! www.lupus-europe.org/emails/
... See MoreSee Less

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