Month: November 2022

Fabienne Lacombe, Director of AFS, provides an insight into their work.

About AFS

The France Spondyloarthritis Association (AFS) is an association of people with spondyloarthritis. It is run by patients, for patients and their relatives, regardless of their geographical location.

The AFS is approved by the Ministry of Health, and its membership of ASIF enables it to represent France on an international stage. It strengthens its relations with other associations in the interest of patient members.

Spondylitis in France

The number of people in France affected by spondylitis is estimated between 200,000 and 300,000. This disease affects young people, with the average age being 28, and unfortunately does not spare children. Currently, the average diagnostic delay in France is between 3 and 6 years.

AFS’ goals

The AFS is above all a place of exchange of knowledge and experiences for a whole community of people with Spondyloarthritis. As such, it organises medical conferences throughout the year and writes reports intended to deepen the knowledge of each of its members through magazines and its website. AFS raises awareness of the disease and its difficulties, and provides daily support to its members.

The association is an essential link to the medical profession and research. It shares information from member surveys with doctors, and collects donations to finance research programs on spondyloarthritis.

AFS’ mission

The AFS has set itself the mission of helping, within an ethical framework, patients suffering from spondyloarthritis to resolve the difficulties they may encounter in their daily lives, on a medical, social and professional level. It also aims to support each patient and ensure that all patients, regardless of their social or geographic situation, benefit from the same therapeutic treatments.

Conclusion

AFS’ existence and functioning are essential in supporting men and women who suffer and whose daily journey remains a real ordeal. The information they receive will always be insufficient in the face of the many questions that challenge them (significant difficulties in family or professional life, the maze of administrative procedures to ensure or maintain their future, the doors that close in the face of projects, the entourage that moves away because of illness, etc). The will of our Association is directed above all towards the patient by bringing him reliable and precise information on this disease which is often not correctly and sufficiently known

The AFS created Paye Ma Douleur to help parents and health professionals understand the pain of children with chronic inflammatory rheumatism, but also those suffering from other conditions that cause pain because they are often under-evaluated. AFS wanted to find a way for the child to be better understood and heard.

The platform includes three age groups from 3 to 18 years old. It allows children and teenagers with pain to describe it throughout the day. Paye Ma Douleur is not just a simple online application, it is also a real means of communication with those around them and with doctors, it allows them to put words to their pain.

Find out more at: https://payemadouleur.fr/

AFS’ inaugural Walk’athon took place from 10 – 30 October. It reflected the World Day of Rheumatism’s theme: physical activity and rheumatic diseases.

The event aimed to involve patients in order to highlight the benefits of daily walking on the pain caused by SpA and all chronic rheumatic diseases.

Six other French and foreign associations joined us resulting in 287 teams, 1500 registered, and more than 100,000 km walked.

This formidable inter-associative challenge, with the collaboration of ASIF, allowed patients from all backgrounds to take up the challenge and demonstrate that even with rheumatism, sport can be beneficial against pain.

This first Walk’athon was a real success! We are looking forward to next year’s event being even better!

The AFS thanks its partners Kiplin and Héroîc Santé, the participants, the patient associations, ASIF, and our institutional partners Biogen, Amgen and Lilly France.

 

   

Photo by by Morten Korgvold

Lillann Wermskog, tells us why she chose to become an ASIF Trustee

“I am the leader of Spafo Norway and I started writing for the member magazine before I joined its board. It is important to me to make a difference to other people, so I am passionate about sharing my experience with AS and spreading accurate information about the disease.”

“I am an academic educated in art history and history of ideas from the University of Oslo. In the job I do as head of Spafo Norway I use a lot of what I learned when I studied the history of ideas, where we looked at all the factors in society that influence our decisions and where freedom of expression and freedom of the press are two of the most important things a society has. This is something I take with me by working against discrimination, for justice and being able to contribute to a better quality of life for people with disabilities.”

“For many years, I have written from rheumatology congresses such as EULAR and ACR and see the importance of sharing this knowledge, particularly when working for a better quality of life for patients. In 2018, we got the results of EMAS (the predecessor of IMAS, world’s largest survey about axSpA), where patients from many different countries shared how they live with this disease. Through the work I did with EMAS and IMAS, I understood how important it was that we stand together to address the big questions about axSpA and try to achieve a better quality of life for patients around the world.”

“Being a board member of ASIF provides an opportunity to do this important work globally and meet an incredible number of great people from different countries. I have discovered that we are not so different from each other and many have the same challenges in the different countries.”

“My driving force is to make a difference for people, but I believe that the more people that stand together the more we achieve.”

“Remember, together we are stronger.”

 

We are recruiting for new Trustees in anticipation of some of our current Trustees stepping down next year. If you are interested in joining the ASIF Board, please contact Jo Davies at office@asif.info.

See our full ASIF Board