Sandra Schaftner volunteers for the German Lupus Group, Lupus Erythematodes Selbsthilfegemeinschaft e.V. She is also one of the German-version translation volunteers of Lupus100. Below is a piece Sandra wrote on smoking and lupus. According to a study presented at the EULAR Congress 2023, smokers have a doubled risk of developing lupus. The study also emphasised smoking’s negative impact on medication effectiveness and increased risk of heart attacks due to accelerated atherosclerosis in lupus patients. 

 

Smokers have twice the risk of lupus

According to a study from Greece, smoking more than doubles the likelihood of at-risk individuals developing lupus. This makes smoking one of the most important risk factors for developing lupus. As per the study’s findings, the second important risk factor is first-degree kinship with a person with lupus. George Bertsias, Professor of Rheumatology at the University of Crete, presented the study at EULAR Congress 2023 (where EULAR stands for European Alliance of Associations for Rheumatology) in the early summer of 2023.

French lupologist Professor Laurent Arnaud described the study as very interesting because it was one of the first studies that looked at how to predict lupus development. Only people who already have autoantibodies in their blood or who are directly related to a person suffering from lupus could participate in the study. All of the approximately 60 participants therefore already had certain risk factors for lupus. Participants were followed for up to five years as part of the study. The aim was to find out whether certain factors could be used to predict which people were at greater risk of developing lupus. For this purpose, the participants were asked to provide various information, such as infections, lifestyle information and medication. Blood and urine analyses were also carried out.

Twenty two percent (22%) of the participants developed lupus during those five years of observation. The large amount of information collected about them revealed that there were two main factors that doubled the risk of developing lupus: smoking and being directly related to someone with lupus. “Unfortunately, we can’t do anything about this second point, but we can very well influence smoking,” Prof. Laurent Arnaud said in the Lupus Europe “EULAR 2023 Webinar Debrief – For People Living with Lupus”: “If you are at risk of lupus, you absolutely should not smoke.”

 

Smoking may affect the effectiveness of medicines in lupus

Jeanette Andersen, chair of Lupus Europe, who was in the “EULAR 2023 Webinar Debrief – For People Living with Lupus” with Professor Arnaud, added that until now it was common knowledge that if you have lupus, you should not smoke because it interferes with the effectiveness of your medication and can makes the course of the disease worse. “But now we also have data for before diagnosis and we now know that smoking is bad, whether you already have the disease or not,” Jeanette Andersen concluded.

In the webinar, Professor Arnaud mentioned a study from 2015 in which he was involved; the study found the effectiveness of hydroxychloroquine in skin involvement may be halved due to smoking. “So minus 50 per cent in smokers compared to non-smokers, that’s a big difference,” Professor Arnaud said.

 

Smoking increases risk of heart attacks

A third reason not to smoke is that it increases the risk of accelerated atherosclerosis. According to the Lupus100 website “There is an increased cardiovascular risk related to lupus itself (increased risk of cholesterol deposits in the arteries), which further increases the risk of tobacco-related heart attacks.” Atherosclerosis is one of the most important long-term complications of lupus, along with infections.

 

 

Sources:

For more insights you can watch the Lupus Europe “EULAR 2023 Webinar Debrief – For People Living with Lupus” : https://www.youtube.com/watch?v=2vBISe63b7o

Additionally the Lupus Hub shared slides from Professor Bertsias Study via this tweet: https://twitter.com/lupus_hub/status/1664645654356930566

Further information can be found on the Lupus100 Website’s page “Should I Quit Smoking?” : https://lupus100.org/en/questions/should-i-quit-smoking

 

Text by Sandra Schaftner

 

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Today is rare disease day!

🚨 There are over 300 million people who live with a #raredisease in #europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #rarediseases:

1️⃣ There are more than 6000 identified rare diseases.

2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.

Along with organisations like Rare Disease Day and EURORDIS-Rare Diseases Europe, we will carry on working towards an early diagnosis, access to treatment and equality for #raredisease patients 🙌.

Thank you for your support on this #rarediseaseday!

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#lupus is a #raredisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #raredisease in #europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website

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#Lupus is a #RareDis

Today is #RareDiseaseDay!

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Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
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😃 Throwback to the HMA/EMA Multi-Stakeholder Workshop on Artificial Intelligence.

Watching Alain Cornet show the world what #LupusGPT really is still gives us goosebumps! 🙌

For those who still don't know this artificial intelligence tool:

💡 LupusGPT is built by patients and doctors.
🗣️ It speaks virtually any language.
💸 It’s free and anonymous- you don’t need to create an account.
📚 It is trained exclusively on a curated repository of validated documents.
🚫 It does not invent answers.

If something is not in the repository, LupusGPT will clearly say so. It will not guess. It will not generate false information.

🥹 Seeing LupusGPT presented at such a high-level regulatory forum confirmed something important:
Patient-led innovation can meaningfully contribute to the future of AI in medicine when it is built responsibly.

🔗 Try it here! lupusgpt.org/

🧠 Are medical terms confusing? Prefer shorter explanations in simple language?
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