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May 10th is World Lupus Day

What is lupus?

Lupus is a chronic autoimmune disease that causes the immune system to attack the body’s connective tissue and organs. Parts of the body affected can include the joints, kidneys, heart, lungs, brain, blood and skin.

Up to 500,000 people in Europe have lupus. 90% of people with lupus are women and 80% of diagnoses are made between the ages of 15 and 45.

Symptoms can vary. The less severe ones include rashes, hair loss (alopecia), swollen glands, photosensitivity, joint pain and ulcers in the mouth or nose. In more severe cases, lupus may cause pleurisy, pericarditis, psychosis, meningitis, epilepsy or kidney failure. In young women, lupus can cause miscarriage or premature delivery.

If lupus affects vital organs and is left untreated it can be potentially fatal as it may cause organ damage and failure. Fortunately, in most cases, treatment puts lupus into remission before that can happen.

Great progress has been made developing treatment plans that considerably reduce lupus activity for most patients, however there is no cure yet! Typical treatment may include antimalarials (hydroxychloroquine), steroids (prednisolone), non-steroidal anti-inflammatories, and immuno-suppressants. Many patients do well on current medication but patients with more severe forms of lupus need more treatment options and solutions which reduce the current reliance on cortisone and its many long term side-effects. A complete treatment plan should also include physical exercise which is proven to have positive effects on fatigue, pain and mental health.

In March 2011, a new biological treatment became the first FDA-approved lupus drug treatment in over 50 years, however, is only used in limited cases due to its high cost. Several new treatments are now in the research and development process, but lupus research remains challenging because the disease itself is so multifaceted and complex in origin, with a mixture of genetic, environmental and other factors that has yet to be understood.

For most patients, living a full life with lupus is now possible, thanks to increasingly accepted standards of care, but this relies on early diagnosis, consistent treatment prescribed by a lupus specialist, and adherence to medication. Getting back to an active professional life may present a challenge for some but many people are able to return once their lupus is well controlled. Most women who want to start a family will also be able to if they plan their pregnancy carefully, with specialist supervision.

lupus europe

What is LUPUS EUROPE?

LUPUS EUROPE is an umbrella organisation that federates national lupus groups across Europe. It represents 26 groups (between 15-6,000 members), in 24 countries (33,000 people in all). It was first formed in 2000 (formerly known as ELEF).

LUPUS EUROPE’s activities include raising awareness, sharing information between members and countries, empowering national groups, and helping members participate in and benefit from research. Over the years, LUPUS EUROPE has fought hard for patient-centred care and the inclusion of patient organisations as valued healthcare stakeholders.

 

kick lupus poster with logo

The Kick Lupus campaign – Why ‘Kick Lupus’?

The campaign ‘Kick Lupus!’ focuses on the need for the development of better treatments, increased awareness about the disease’s impact, and management options for patients, carers and health professionals.

Kick-starting a better life – adhere to treatment: Not taking medication or taking it incorrectly is the #1 reason why treatment doesn’t work. Treatment is critical to living well with lupus. Know your pills, and follow your doctor’s advice. Doing so will help you kick your lupus!

Kicking ideas around – patient/doctor communication is key: We will only win in lupus if we work together as a team. The Doctor/Patient relationship is crucial: agreeing on treatment plans, working together on new treatment options, and participating in research to better kick lupus into oblivion!

Kicking yourself into shape: physical activity reduces tiredness and pain: It has been scientifically proven that physical activity helps reduce fatigue and pain. This is also true for people with lupus. It can be hard to exercise at first but it soon starts to pay. Exercise regularly, gradually increasing difficulty and endurance. A key component in kicking lupus!

Kicking lupus awareness into midfield: volunteer in your local group: You are not alone. Many of us are trying to kick lupus, and we need to move together, cheering each other on when we feel the burden – helping each other when we can. All our member organisations need volunteers to increase awareness and take projects forwards, kicking lupus together!

Help us Kick lupus NOW! Take your first steps today. You can find the list of local member groups on the LUPUS EUROPE Website (www.lupus-europe.org).

 

 

 

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6 days ago
LUPUS EUROPE

Over two billion people live with over 3000 different dermatological conditions. Lupus is one of them. That is the reason we'd like your input in the Global Research on the Impact of Dermatological Diseases (GRIDD) project by International Alliance of Dermatology Patient Organizations - IADPO.

Taking part on this project is very easy! You will only need to take a short 10-15 min survey in English. The survey tests a new tool that measures the impact of your disease. Doing this will help measure and validate the very real and difficult challenges faced by dermatology patients globally.

You can find the survey and all the information about the project in this link: globalskin.org/research/about-phase-4
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Over two billion people live with over 3000 different dermatological conditions. Lupus is one of them. That is the reason wed like your input in the Global Research on the Impact of Dermatological Diseases (GRIDD) project by International Alliance of Dermatology Patient Organizations  - IADPO. 

Taking part on this project is very easy! You will only need to take a short 10-15 min survey in English. The survey tests a new tool that measures the impact of your disease. Doing this will help measure and validate the very real and difficult challenges faced by dermatology patients globally.

You can find the survey and all the information about the project in this link: https://globalskin.org/research/about-phase-4Image attachmentImage attachment
1 week ago
LUPUS EUROPE

Today is #WorldSclerodermaDay! 🌻

A day that brings together scleroderma communities from around the world to raise awareness and show solidarity with those facing the challenges of this rare, invisible and disabling disease. On this special day, we want to reaffirm that we're here to support you, encourage you and help you find the light bloom.

#BloomWithScleroderma today and always.

Read more about our campaign 👉
fesca-scleroderma.eu/wsd2022/?utm_source=facebook&utm_medium=facebook-feed&utm_campaign=organic-c...
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2 weeks ago
LUPUS EUROPE

LEAF is an online tool developed by Dr. Laurent Arnaud whose objective is to assess fatigue and give some personalised advice on how we could manage it.

Fatigue could be affected by stress, low sleep quality or pain. The LEAF questionnaire will assess your pain based on your responses regarding depression, pain, stress, anxiety and quality of sleep. Once the data is analyzed, LEAF will give you some hints that could help improve fatigue.

The questionnaire is in English, French and Spanish and the answers will help understand more about fatigue! You can do LEAF even if you don’t have an autoimmune disease.

iamfatigued.limequery.org/584745?lang=en
... See MoreSee Less

LEAF is an online tool developed by Dr. Laurent Arnaud whose objective is to assess fatigue and give some personalised advice on how we could manage it. 

Fatigue could be affected by stress, low sleep quality or pain. The LEAF questionnaire will assess your pain based on your responses regarding depression, pain, stress, anxiety and quality of sleep. Once the data is analyzed, LEAF will give you some hints that could help improve fatigue. 

The questionnaire is in English, French and Spanish and the answers will help understand more about fatigue! You can do LEAF even if you don’t have an autoimmune disease.

https://iamfatigued.limequery.org/584745?lang=en

Comment on Facebook

This looks really interesting, thanks. Fatigue is probably the worst aspect of having Lupus. Anything that helps manage that has to be a bonus

Such an endeavour to struggle !

2 weeks ago
LUPUS EUROPE

The 33rd Lupus Europe Annual Convention was held in person and online this year! After a General Assembly this past Sunday and a Board Meeting yesterday we are very happy to present you with the new Board of Directors of Lupus Europe!

We would like to take this opportunity to also offer our sincere congratulations to our newest member of the Board, elected on Sunday! A warm welcome to new Board Member, Dalila Tremarias!
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The 33rd Lupus Europe Annual Convention was held in person and online this year! After a General Assembly this past Sunday and a Board Meeting yesterday we are very happy to present you with the new Board of Directors of Lupus Europe!

We would like to take this opportunity to also offer our sincere congratulations to our newest member of the Board, elected on Sunday! A warm welcome to new Board Member, Dalila Tremarias!

Comment on Facebook

Congratulations Dalila Tremarias! Over the moon for you. They’re lucky to have you on board. 💜 👏

Congratulations Dalila 💜

Well done Dalila - so proud of you xx

Well done all of you and thanks .I am amy somers mum

I'm so proud of you!@Amy Somers.miss you much x

Congrats Dalila!!👍😁

What an amazing group of lupies.

Congratulations ❤️

Felicidades dalila

Dalilavan harte gefeliciteerd

Felicitaciones

🌹🌹🌹👍👋👋👋👋

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LUPUS EUROPE Uniting people with Lupus throughout Europe
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