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Following on from the workshop held during the Helsinki convention, LUPUS EUROPE organised a Patient panel, bringing together 10 people living with lupus, from 7 countries, to share their experience about “treatment”, with a view to help improving the quality of life of people living with lupus. The Panel was conducted through a series of interactive presentations, team discussions and working groups, and resulted in the drafting of 3 letters addressed respectively to: People living with lupus, Patient Organisations, and the medical community; suggesting how they can each help in their respective areas.

The key points highlighted during the two day event were:

“Treatment” is broad; it is both medicine based and non-drug based, and can be categorised in three ways – core, medical, and well being. Treatment can be defined as any product or activity that aims at improving quality of life for the person with lupus.

Access includes ease of contact with Health Care Practitioners and support services such as orthotics as well as availability of medicines.  The individual’s personal adherence can be reinforced or weakened by the relationship with the Health Care Practitioner.

Patients will take new medicine provided they understand the reasons why and the side effects; management of patient expectations in terms of medication (speed of noticeable effects) and relating to support staff are equally important for correct treatment compliance.

We noted a dual-faceted infusion experience, as viewed by the person with lupus; it can either be viewed as an experience which emphasises their own incapacity or one which they view as contributing to their long-term quality of life.

Patient Organisations have a critical role to play, creating a community, sharing reliable information, providing hope, raising awareness and advocating for lupus.

Please read the report available here (members only area). If you have forgotten your login or password to access the members’ section, send an email to secretariat@lupus-europe.org 

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7 days ago
LUPUS EUROPE

Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus.

What is the question you should have asked and you didn't?

What is the question you think physicians should answer without being asked?

#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.
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Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus. 

What is the question you should have asked and you didnt?

What is the question you think physicians should answer without being asked?
 
#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.

Comment on Facebook

Qu'es le lupus ? Moi j'ai eu a " c'est un lupus...comme votre grand mère" point final Je me suis imaginer ,mes mains se déformer,me paralyser j'ai eu peur maintenant 7 ans plus tard bien-sûr chez changer d'internet me suis tourné vers un rhumatologue et centre des douleurs un nouveau immunosuppresseurs mais pas d'explication sur les effets secondaires a part pour le foie ... suspens es ce que mon corps va accepte ce médicament

Recording your appointment helps

Medication side effects short and long twem

1 week ago
LUPUS EUROPE

More good news for the #lupus commnunity!!

Voclosporin has been approved in Europe for the treatment of adults with active lupus nephritis in combination with a background immunosuppressive therapy regimen.

ir.auriniapharma.com/press-releases/detail/263/aurinia-announces-european-commission-approval-of
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1 week ago
LUPUS EUROPE

Date is set! And #Lupus100 is fast approaching.
If you haven't done yet, subscribe to our newsletter to get the latest updates!

www.lupus-europe.org/me-lupus/lupus-europe-info-centre/
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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