Tomorrow, 30th March, Katharine will be taking part in the second meeting of the EPF working group on Access to Healthcare. More details here.
Dear Lupus Europe members,
The theme for this year’s World Lupus Day is “Tame your wolf – Tame your lupus”.
We were delighted to be able to ask Leslie Quagraine, a fellow lupus sufferer, if he could produce the artwork for our campaign. Leslie was born in London but is a long-time resident in Finland. He has been a freelance illustrator for 37 years.
Here is what Leslie has to say about his involvement in this project:
“The two symbols associated with lupus, latin for wolf, are the wolf and the butterfly. Although the rash across many a lupus sufferer’s face is an unwanted symptom, its butterfly shape has become a symbol associated with the care of the disease.
The young woman in the poster is determined to control her lupus/wolf, with the support of a squadron of butterflies. The variety of butterflies indicate that symptoms and treatments differ from patient to patient.”
With this campaign we hope to be able, not only to increase awareness, but also to promote better management of people’s lupus and a feeling of empowerment. The idea of taming the wolf is a strong message that it is possible to actively participate in our care and tame our disease.
Work on the Lupus Tamer book is nearly complete for French and English. We will announce when it is available in e-book format.
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.
Kirsten attended the Lupus Academy meeting in Rome from 27-28th February – 1st March
The trustees will be meeting from 20th – 22nd March – Items on the agenda include organisation for our 2015 Convention to be held in Vienna following directly on from the ICL congress – more information on the convention coming soon!
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