Lupus Suisse
Have you been diagnosed with lupus in Switzerland?
You are not alone.
lupus suisse is the Swiss patient organization for people with Systemic Lupus Erythematosus (SLE). It provides you, as someone affected* or a family member*, with understandable information, professional counseling, and a strong community in everyday life with this chronic autoimmune disease.
Living with lupus: when an invisible illness shapes everyday life
A diagnosis of an autoimmune disease raises many questions.
Systemic Lupus Erythematosus often remains invisible to those around you. As someone affected in Switzerland, you struggle every day not only with physical symptoms. You also often experience a lack of understanding at work and in your private life.
Are you concerned with topics such as…
Chronic exhaustion:
Do you suffer from extreme fatigue?
Do you have persistent joint pain that is not visible from the outside?
Unpredictable flares:
Does the constant uncertainty about when the next lupus flare will occur weigh on you?
Does the uncertainty about how severely a flare will affect your organs or your skin worry you?
Isolation & hurdles:
Are you looking for answers about sun protection with lupus?
Or about pregnancy, disability insurance, or the right diet?
Lupus Suisse supports you.
Advice, exchange, and expertise
Lupus self-help groups
Stronger together through regional exchange
Find like-minded people in your region. Our regional self-help groups in German-speaking Switzerland, French-speaking Switzerland, and Ticino offer you a safe space for exchanging experiences. They create mutual understanding. They share valuable everyday tips from patients* for patients*.
You have what? Lupus ery-tery…?
Actually, it would be kind of nice to have a “wolf”!
You may feel that having something special, rare, or extraordinary is somehow unique. But it’s not good that you are in pain and constantly tired.
Do you want to go to the club tonight with your best friends* and party all night? You’ll be exhausted before midnight. Your medication doesn’t mix well with alcohol. So you’d rather skip it than stand out in an awkward way.
Learn to deal with it, don’t give up, and still live your life.
Knowledge
Understand your condition better.
lupus suisse provides you with medically reviewed brochures, contact details for specialists*, resources, and the member magazine “Lupus Magazine”. You will find reliable answers about everyday life and medical advances.
Advocacy
Your voice in the Swiss healthcare landscape
Whether you have questions about social insurance, workplace rights, or finding a doctor: we are here to advise you. lupus suisse raises awareness of this rare disease among the Swiss public and represents your interests with authorities and medical professional bodies.
We are here for you!
Your lupus suisse team
Behind lupus suisse is a dedicated board made up of patients, family members, and medical professional advisors; we know the hurdles of the disease from personal experience and want to offer you the best possible guidance in the Swiss healthcare system. You don’t have to go down this road alone—contact us for personal counseling.
Do you just want to pour your heart out to someone, need advice, feel that doctors* don’t take you seriously, or are you alone with your lupus? Then get in touch with lupus suisse—we listen to you, offer personal counseling, and help you find the right contacts and support services.
Simple – Direct – call us.
Heike Thomys | 079 647 36 60 | heike.thomys@lupus-suisse.ch
If you need urgent help, want to contact someone by phone, chat, or email, contact 143.ch – The Helping Hand.
Become a member – stronger together!
Benefit from discounted information materials, exclusive events, and direct access to our Swiss counseling network; your membership strengthens the voice of all people affected by lupus.
Provide help!
As a non-profit association, we finance our work and awareness-raising about systemic lupus erythematosus largely through donations; every contribution helps us to support those affected directly on the ground.
FAQ | Frequently Asked Questions about Lupus in Switzerland
What are the first typical symptoms of lupus?
The symptoms of systemic lupus erythematosus are very diverse and are therefore often referred to as a “chameleon”. The most common early signs include extreme, chronic exhaustion (fatigue), joint pain and swelling, unexplained fever, and the butterfly-shaped facial rash, which can worsen with sun exposure. Because symptoms occur in flares, the diagnosis is often made late. If you notice such symptoms, please seek medical advice—only professionals can carry out assessments and initiate appropriate care.
Is lupus a hereditary disease and is SLE curable?
Lupus is not a classic hereditary disease; however, there is a genetic predisposition that increases the risk of autoimmune diseases. Currently, systemic lupus erythematosus (SLE) is not curable; thanks to modern therapies and medications such as immunosuppressants or biologics, the chronic inflammation can be very well controlled in most cases. The goal of treatment is to alleviate symptoms, prevent flares, and avert organ damage.
What support does lupus suisse offer to those affected in Switzerland?
As a Swiss patient organization, lupus suisse offers patients and their families a comprehensive support network: we connect you with regional self-help groups in German-speaking Switzerland, French-speaking Switzerland, and Ticino, listen to you when you have urgent questions, offer personal initial consultations, and organize information events so you can successfully manage everyday life.
Is it possible to become pregnant and work with a lupus diagnosis?
Yes, pregnancy and employment are generally possible with lupus. However, a pregnancy should be planned closely in advance with your treating rheumatologist*. The disease should be in a quiet phase (remission). Some medications need to be adjusted. In working life, too, the ability to work can often be maintained. This can be achieved through targeted job coaching, ergonomic adjustments, or a reduced workload in cases of severe fatigue.
How is lupus diagnosed in Switzerland?
As a rule, a specialist* in rheumatology or clinical immunology will make your diagnosis. There is no single, clear “lupus test”. The diagnosis is based on a combination of your physical symptoms, tissue samples, for example from the skin or kidney, and specialized laboratory blood tests. Particularly important is the detection of antinuclear antibodies (ANA) and specific autoantibodies such as anti-dsDNA antibodies.