Lupus Suisse
Diagnosed with lupus in Switzerland? You are not alone.
lupus suisse is the Swiss patient organization for people with Systemic Lupus Erythematosus (SLE). We provide patients and their families with understandable information, professional counseling, and a strong community in everyday life with this chronic autoimmune disease.
Living with Lupus: When an invisible illness dictates daily life
A diagnosis of an autoimmune disease raises many questions.
As Systemic Lupus Erythematosus (SLE) is considered the “chameleon of medicine,” it often remains invisible to those around you. Those affected in Switzerland struggle daily not only with physical symptoms but often also with a lack of understanding in their professional and private lives.
Are you concerned with topics such as…
Chronic exhaustion:
Do you suffer from extreme fatigue and persistent joint pain that is not visible from the outside?
Unpredictable flares:
Are you burdened by the constant uncertainty of when the next lupus flare will occur and how severely it will affect your organs or skin?
Isolation & hurdles:
Are you looking for answers to topics such as sun protection for lupus, pregnancy, disability insurance (IV), 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, mutual understanding, and valuable daily tips from patients for patients.
You have what? Lupus ery-tery…?
Actually, it would be kind of nice to have a “wolf”!
And how cool would it be to have something rare and extraordinary! But it is not cool that you are in pain and constantly tired.
Do you wish to go to the club tonight with your best friends and celebrate all night? You will feel exhausted before midnight, and your medication is not compatible with alcohol anyway. So it is better to refrain than to stand out in such an awkward way.
Knowledge
Understand your disease better.
We provide medically reviewed brochures, contact details for specialists, aids, and our members’ magazine “Lupus Magazine”. Receive reliable answers on everyday matters 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 of directors consisting of patients, relatives, and medical advisors. We understand the challenges of the disease from our own experience. Our goal is to provide you with the best possible guidance within the Swiss healthcare system and to show you that you do not have to walk this path alone. Please contact us directly for personal advice.
Do you just want to unburden yourself? Do you need advice? Do you feel that doctors are not taking you seriously? Do you feel alone with your lupus?
Then please contact:
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.
Empower yourself!
Benefit from discounted information materials, exclusive events, and direct access to our Swiss counseling network. Your membership strengthens the voice of all lupus patients.
Provide help!
As a non-profit association, we finance a large part of our work and awareness-raising about Systemic Lupus Erythematosus 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 (SLE) are very diverse, which is why the disease is also referred to as a “chameleon”. The most common early signs include severe, chronic fatigue, joint pain and swelling, unexplained fever, and the characteristic butterfly-shaped facial rash (malar rash), which often worsens after sun exposure. Because symptoms occur in flares, the diagnosis is often made only at a late stage.
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 medical therapies and medications (such as immunosuppressants or biologics), the chronic inflammation can now 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 those affected and their families a comprehensive support network. We facilitate contacts with regional support groups in German-speaking Switzerland, French-speaking Switzerland, and Ticino. Additionally, we provide a listening ear for urgent questions, personal initial consultations, and informational events to help successfully manage daily life.
Is it possible to become pregnant and work with a lupus diagnosis?
Yes, pregnancy and professional employment are generally possible with lupus. However, a pregnancy should be planned closely in advance with the treating rheumatologist, as the disease should be in a phase of remission and certain medications may need to be adjusted. In professional life, the ability to work can often be well maintained through targeted job coaching, ergonomic adjustments, or a reduced workload in cases of severe fatigue.
How is lupus diagnosed in Switzerland?
The diagnosis is usually made by specialists in rheumatology or clinical immunology. Since there is no single, definitive “lupus test,” the diagnosis is based on a combination of the patient’s physical symptoms, tissue samples (e.g., from the skin or kidneys), and specialized laboratory blood tests. The detection of antinuclear antibodies (ANA) and specific autoantibodies, such as anti-dsDNA antibodies, is particularly important.