Today is Rare Disease Day!

Lupus is a rare disease in Europe, although for those living with it, it doesn’t feel rare at all!

There are estimated to be less than five in 10,000 people in Europe who are living with lupus. Having a rare disease means that most people around you don’t have any idea what you are going through.

 

(Positive aspect of COVID and LOCKDOWN?)

 

Up until a year ago, living with lupus meant for some, living in fear and isolation. Some lupus patients take medication that suppresses their immune system to treat their lupus, but this can make people susceptible to infections. Lupus patients often live with the threat of another bug, another flare, another complication and never know what tomorrow might bring.  But today, there’s a new feeling almost of relief. People with lupus do not feel alone anymore!

 

Living in lockdown, with the threat of COVID-19 just outside the door, has brought up feelings of isolation and of being afraid of an invisible enemy for everyone. And while that is horrible and we wish it would stop as soon as possible for people everywhere, it is what some people with lupus may experience all the time. So today when we go out, masked, gloved, with our bottle of sanitising gel, no-one looks at us weirdly. When we avoid parties, or crowds, … for the first time ever we don’t have to explain or justify our behaviour.

 

Surprisingly, there have been positive aspects of this pandemic: the generalisation of remote working, telemedicine becoming a reality, remote ordering of medicines, more awareness of the effects of chronic diseases because of the awareness around “long covid” effects!  Perhaps you have some other examples?  Let’s make sure we are very clear about how much we appreciate those developments.  As lockdowns end and we push COVID to the back of our minds, let’s not forget the lessons we all learned during this time. Let’s all use this experience as a starting point for an ongoing conversation with your friends, your families, your healthcare workers, with society at large.  Let’s all discuss how to keep those improvements, while working together to end the isolation people with rare diseases often feel.

 

(LUPUS AND COVID VACCINES)

One step to getting out of lockdown is the COVID19 vaccination.  SLEuro (The European Lupus Society is a community of clinicians and researchers interested in SLE and related syndromes) has released a very useful Q&A document on the Covid vaccine for patients with SLE.  You can find it here: https://sleuro.org/sars-cov-2/

 

A lot of lupus patients around Europe have been vaccinated already, but many have not yet been offered a vaccine.  Each country has its own vaccination priority lists. Lupus gives automatic priority in some EU countries, not in others. What is the situation in your country? What are things like for you? Have you been vaccinated? Let us know by commenting under this post on our Facebook page and on Twitter!

 

(LUPUS RARE DISEASE)

Today is Rare Disease day. We should all be aware of two significant actors that help the rare disease community raise their voices in Europe: Orphanet and Eurordis

Orphanet is the portal for rare diseases and orphan drugs, a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. https://www.orpha.net/

 

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 956 rare disease patient organisations in 73 countries. https://www.eurordis.org/

Have a quick look on their websites and see what they are fighting for and doing for you!

 

(RARE 2030 RECOMMENDATIONS)

This week, the recommendations from the Rare2030 foresight study were released:

 

http://download2.eurordis.org/rare2030/Rare2030_recommendations.pdf

 

Rare 2030 is a proposal of EU policy recommendations that will bring improved policy and a better future for people living with a rare disease in Europe. This two-year project  was presented to EU Parliament last week with recommendations on the most critical areas needing better policy.

Here you can find information about Rare 2030: https://www.rare2030.eu

 

Please have a look at it and share it widely in your groups and countries. We will need to encourage our EU ministers to support it, so it’s good to learn as much as possible about it.

 

Use Rare Disease Day to start that conversation around you.

 

As they say: “Rare diseases are rare, but rare disease patients are numerous”.[/vc_column_text][/vc_column][/vc_row]

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2 weeks ago
LUPUS EUROPE

🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲.

🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

🤔 So, how can we #kicklupus with prevention?
... See MoreSee Less

🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲. 

🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

🤔 So, how can we #KickLupus with prevention?Image attachmentImage attachment
4 weeks ago
LUPUS EUROPE

🌟 Calling all Lupus Patient Organisation Volunteers! 🌟

🗣️ Your Voice Matters!

We want to hear from YOU!

❓ Are you a volunteer for a lupus patient organisation?

Your insights are invaluable! 💎

Participate in our quick survey, taking just 2-3 minutes of your time, and help us understand volunteer motivations better.

Your feedback will help shape the future and help us understand what we should work on to make our volunteers happier and more motivated.

✍️ You can answer in English or in your own language.

Ready to share your thoughts?

🔗 Click the link below and let your voice be heard!

s.surveylegend.com/-NfBafeCoorOLsOkK1Du

🤗 Thank you for reading this post and considering answering the survey!

Together, we can make a huge difference! 💪
... See MoreSee Less

1 CommentComment on Facebook

🤷‍♂️

4 weeks ago
LUPUS EUROPE

📆 New month, new challenge!

🍁 As the calendar flips to November, our #kicklupus campaign has a new theme!

🤔 Can you guess what this month's theme is all about?

💡 Hint: It's all about implementing measures to help us hold #lupus at bay!

🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus.

Ready to embark on this journey with us? 💪
... See MoreSee Less

📆  New month, new challenge!

🍁 As the calendar flips to November, our #KickLupus campaign has a new theme! 

🤔 Can you guess what this months theme is all about?

💡 Hint: Its all about implementing measures to help us hold #lupus at bay!

🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus. 

Ready to embark on this journey with us? 💪

1 CommentComment on Facebook

💪🏻🍀

1 month ago
LUPUS EUROPE

‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to:

🔹Fear
🔹Lack of trust
🔹Feeling of unsafety
🔹Belief in good health
🔹Lack of recommendations by doctor

💡Let's #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.

𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines

✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

𝐌𝐲𝐭𝐡 3️⃣: Lupus patients can't receive live vaccines

✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms

✅ Vaccines don't worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients.

𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission

✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis.

𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life

✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you

🌏 Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

ard.bmj.com/content/79/1/39
... See MoreSee Less

‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to:

🔹Fear
🔹Lack of trust
🔹Feeling of unsafety
🔹Belief in good health
🔹Lack of recommendations by doctor

💡Lets #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus. 

𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines

✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

𝐌𝐲𝐭𝐡 3️⃣: Lupus patients cant receive live vaccines

✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms

✅ Vaccines dont worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients. 

𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission

✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis. 

𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life

✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you 

🌏 Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

https://ard.bmj.com/content/79/1/39Image attachmentImage attachment+6Image attachment
LUPUS EUROPE Uniting people with Lupus throughout Europe
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