Letter to the Doctor – From the Lupus Europe Youth Group

Image shows the participants of the Lupus Europe 2nd Patient Panel on Youth, in a meeting room. Participants are split into two groups, across two tables and they are in the middle of a workshop. A slide on being a young patient with lupus is projected onto the screen. On February 3-5 2023, Lupus Europe organised its 2nd Patient Panel on Youth, bringing together 10 young people from all  over Europe to share their experience of living with lupus. The Panel addressed key issues young participants identified in their life with lupus and explored the possibility of creating a Lupus Europe youth group.

 

 

 

 

 

In their own words, Participants write: 

A group of European Young adults who are living with lupus met in Barcelona in February 2023 to discuss how to best support the next generation of people with lupus. Collectively, we put together what we would like to share about our treatment and experience of living with lupus with doctors.

To read the letter, go to: https://www.lupus-europe.org/wp-content/uploads/2023/07/Letter-to-the-Doctor.pdf 

 

As a result of this Patient Panel, many of those young adults went on to form the Lupus Europe Youth Group. To find out more about this initiative e-mail secretariat@lupus-europe.org. To apply to join the next Youth Group Meet Up due to take place in October 2023, go to:  https://www.lupus-europe.org/lupus-europe-youth-group-meet-up/

 

facebookShare on Facebook
TwitterTweet
FollowFollow us

About the author

Zoe Karakikla-Mitsakou

    Live Facebook Feed

    Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
    Author Avatar
    LUPUS EUROPE
    5 days ago

    We are very proud to share that LupusGPT has now been published in The Lancet Rheumatology, one of the world’s leading medical journals in rheumatology.

    For us, this is not only about a publication. It is about what LupusGPT stands for.

    LupusGPT is free. It is patient-led. And it was built to help people living with lupus find reliable, accessible information in almost any language.

    It began with a simple but important question: what could become possible if patients, clinicians, and digital experts truly worked together from the start?

    That question was first opened up in a fishbowl discussion at the European Lupus Meeting 2024 on how the lupus community could get the best, but not the worst, out of AI. From there, LupusGPT was shaped through the care, intelligence, and effort of many people: volunteers, patient testers, clinicians testing across languages, people who gave feedback, and people already helping us share it with patients in clinics, organisations, and communities.

    This publication matters because it shows that patient-led innovation belongs in the scientific world too. It shows that when patient voice is not added at the end, but built in from the start, something real can grow.

    A heartfelt thank you to all authors: Zoe Karakikla-Mitsakou, Alain Cornet, Jeanette Andersen, Sarah Dyball, Cristiana Sieiro Santos, Daniel Guimarães de Oliveira, and Laurent Arnaud. Special thanks also to Daniel Guimarães de Oliveira for the thought, care, and belief he brought to this work, and to Professor Laurent Arnaud for his outstanding support, steadiness, and guidance.

    And above all, thank you to everyone in the Lupus Europe community who keeps showing us why this matters.

    LupusGPT. Free. Multilingual. Patient-led. And now part of the scientific record.

    doi.org/10.1016/S2665-9913(25)00370-4

    Read it for free now! You only need to register (registration is completely free and takes 1')     ... See MoreSee Less

    We are very proud to
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments likes love 30 Shares: 14 Comments: 2

    2 CommentsComment on Facebook

    Author Avatar
    LUPUS EUROPE
    2 weeks ago

    🚨 Today is #WORDDAY2026! Which stands for WOrld Young Rheumatic Disease Day.

    🌍 Through this global event, we can spread the word that children and young people get rheumatic diseases like lupus, too.

    ‼️ It is estimated that around 15-20% of #lupus patients are children, although it is rare that a child develops lupus before 5 years of age.

    As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control.

    🔴 On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids.

    😰 The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information.

    👉 Remember: it is impossible to learn everything about #lupus overnight! Your child's doctor is the best source of information.

    Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management.

    📷 Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness.

    🐺 Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job!

    Turn to your lupus association for support.

    🤗 There are many organisations across Europe that can help you and your child cope with the disease.

    More information on #SLE in children at #Lupus100: f.mtr.cool/oklkpqamyu

    For more information on WORD Day, you can visit World Young Rheumatic Diseases Day - WORD Day     ... See MoreSee Less

    Image attachment
    Image attachment
    Image attachment
    Image attachment
    Image attachment
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments likes love 10 Shares: 1 Comments: 0

    0 CommentsComment on Facebook

    Author Avatar
    LUPUS EUROPE
    2 weeks ago

    🔴 Tomorrow is #WORDDAY2026!

    🦋 And we will be sharing tips and information on how #lupus can affect children.

    Help us raise awareness, which is key for an early diagnosis & a quick referral to a specialised paediatric rheumatologist.

    Share our posts and follow the World Young Rheumatic Diseases Day - WORD Day campaign.

    More information on lupus in children at #Lupus100 (19 languages):

    f.mtr.cool/hnfukbkwdf     ... See MoreSee Less

    🔴 Tomorrow is #WO
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments likes 13 Shares: 6 Comments: 0

    0 CommentsComment on Facebook

    Author Avatar
    LUPUS EUROPE
    2 weeks ago

    Watch this Lupus Europe Webinar on the European Lupus Meeting (ELM) 2026, As Viewed by Lupus Europe's PAN Members & Volunteers!

    ... See MoreSee Less

    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments likes love 10 Shares: 3 Comments: 0

    0 CommentsComment on Facebook

    LUPUS EUROPE Uniting people with Lupus throughout Europe
    Send