Kirsten Lerstrøm speaking at the European Parliament ENVI Committee on Autoimmune Diseases

Monday, September 25th Chair Kirsten Lerstrøm, LUPUS EUROPE, has been invited to address the European Parliament ENVI Committee on “The case of lupus: Prevention and Treatment of Autoimmune Diseases” at the workshop in Parliament on “Autoimmune Diseases – modern diseases”.

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Message is that lupus is complex and complicated both to manage and to live with. Only one new compound in 50+ years has passed Phase III of clinical trials. Cause of disease is still unknown yet a special cocktail of genes and environmental factors can trigger onset of lupus and further direct the course of disease.

Current treatment and practice might keep us out of the hospital bed, but not out the sick bed. Our LEO study1 showed that only about half of us living with lupus maintain connection to the workforce, and the majority of those do so on reduced terms: while diagnosed at the age of 37 (25-45 yrs) and time to diagnosis is 7 years (average); This serious change of life happens at the time of establishing family and career!

There is no vaccine or golden rule of behavior that will prevent disease onset or further development. We have learned though the past few years that treatment plan is a shared decision between you and your treating specialist, so follow this plan. Also considering the typical comorbidities of autoimmune disease are complications from photosensitivity, smoking, level of exercise and dietary adjustment to observe CVDs could improve the general health status.

Current treatment recommendations are anti-malarials (hydroxychloroquine) to provide the long-term lowering general disease symptoms. When this is not enough, further immunosuppresives can be added, like from milder methotrexate to azathioprin, cyclosporine to mycophenolate mofetil. As a fast actor is generally used prednisolone. Only hydroxychloroquine and prednisolone have been approved for managing lupus respectively 1955 and 59.

There is a list of different biologics used in cases where other treatment is not enough or not having the wanted control of disease activity: rituximab, infliximab, etanercept, adalimumab and belimumab – most of which are used/approved for treatment of rheumatic arthritis. It is very difficult to tell when this or that compound has any effect on the individual, which complicates the efficacy assessment. No one set of biomarkers nor treatment  is yet found.

The failing trials of one compound after another is devastating to witness – each time one less option for perhaps better outcomes and improved quality of life.

Lupus is often viewed as the archetype of autoimmune diseases – if the understanding of why and how this disease operates, then perhaps the autoimmune enigma can be solved!

People living with lupus share some further conditions with other rheumatic and/or autoimmune diseases, like serious fatigue, comorbidities, damage accrual not only from autoimmune response but also from treatment and more. Our special lupus aspect is complexity, the early age, the very burden and the mental impact. We need to do better!

Us living with lupus need to get actively involved in the research by not only delivering body fluids and tissue, but also through involvement in the planning and execution of research.

New approaches to find better research tools for classification of symptoms and disease manifestations clinically (ACR/EULAR) and genetically (IMI PRECISEADS), revision of the EULAR Recommendations of Management of SLE and revision of PROs used to capture disease activity – are in the process and with our representation.

Patient representatives have been actively engaged in building of consortia to launch new initiatives to build a better foundation for the lupus advancement in disease understanding, defining trial end-points and improve the patient reported outcome measures. We are part of the newly established ERN ReCONNET. At the moment we have one lupus representative working for EMA, but we also need to be better represented in other regulatory and political settings locally, regionally and nationally as well as internationally.

It’s World Lupus Day!

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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).

 

 

 

Events May-June-July

May

10th – World Lupus Day “Lupus knows no boundaries”. Special online events global campaign Please go to www.worldlupusday.org for further information.

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11th May – EPF Access to healthcare workgroup meeting in Düsseldorf. Katharine Wheeler attending.

June

8-11thEULAR Congress, London, UK. This year LUPUS EUROPE and LUPUS UK will share a stand in EULAR Village. LUPUS EUROPE is represented by Chair Kirsten Lerstrøm and Treasurer Kirsi Myllys.

15thdeadline for registrering to LUPUS EUROPE Convention 2016, Würzburg, Germany. Also deadline to nominate your candidate to the Board of Trustees elections. 

24-26th – LUPUS EUROPE Board of Trustees meeting.

July

29th – deadline for submission of your stories for the WAD2016 campaign “The Future in Your Hands”. Let us have many good lupus experiences represented! More information here.