Rheumatologists from Aruba to Argentina, Pakistan to Panama and so many countries in between spoke to the ASIF team about our work and the impact Patient Organisations make to the lives of people living with axSpA.
During EULAR, some of the world’s leading researchers and rheumatologists discussed the importance of patient centric research and care. We explored our priorities with our industry partners and how, by strengthening our relationships, we can develop projects that our members can use to change lives.
We will share a report on EULAR soon.
AiArthritis’ Go With Us to EULAR 2023 Live Debrief
Saturday, Jun 17, 2023 on Facebook at 12:00 pm EST / 9:00 am PST (USA).
Click here to attend the debrief live or find out how to watch it on demand.
We are keen to know what topics are of interest to you. Please take 2 minutes to complete this Google Form – thank you!
Upcoming Webinar: Community/Direct Fundraising
The topic will be direct/community fundraising, for example regular donations, bequests, fundraising/sponsored events etc.
This interactive Webinar will be designed for all our Members -whether your organisation doesn’t currently fundraise from individuals; or you do, but you want to get more ideas and hear about what has worked for others.
Is there an area of community fundraising that you are particularly interested in that you would like to discuss?
If you would like to share your organisation’s experience in this area and join the panel, please contact Jo de Bry (communicationsmanger@asif.info).
Precision Medicine in axSpA
Precision Medicine in axSpA with Dr Proton Rahman MD FCAHS
Professor Proton Rahman has been a practicing clinical rheumatologist for over 20 years, in St Johns Newfoundland, Canada. He is a Professor of Rheumatology at Memorial University and has a long history of researching spondyloarthritis – in particular the genetics of psoriatic arthritis and AS.
WatchProfessor Proton Rahman talk about how Precision Medicine could impact axSpA. Join Professor Rahman discuss Precision Medicine, what it is, how it works and the impact it could have on people living with axSpA.
Thank you to Professor Rahman for speaking with ASIF’s members.
The potential to treat axSpA via the gut microbiome
Watch Dr Matthew Brown share his research into the link between axSpA and the gut microbiome in our inaugural Member Webinar.
Dr Matthew Brown MBBS MD FRACP FAHMS FAA, is the Director, Guy’s and St Thomas’ NHS Foundation Trust and King’s College London NIHR Biomedical Research Centre, and is pioneering this exciting area of research.
“What a mind-blowing session. Thank you so much for this very interesting webinar”, Maranda van Dam, Axial Spondyloarthritis Association of South Africa.
World expert in axSpA, Dr. Muhammad Asim Khan, has published an update to his book Axial Spondyloarthritis and Ankylosing Spondylitis
Dr Khan is Professor Emeritus of Medicine at Case Western Reserve University, USA, and has authored and co-authored seven books on AS-axSpA.
“Written for patients by a patient who is also a leading authority on spondyloarthritis, this book is an essential reference and reading for people living with axial spondyloarthritis — with ankylosing spondylitis as its prototype — and their caregivers who want to learn about the disease and how to manage it well” – Michael Mallinson, ASIF
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.
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.
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.
The Founding Member and Secretary of Ankylosing Spondylitis Welfare Society (ASWS), Nagaraja Suryanaranappa (pictured left and below), has just completed his first Ironman Triathlon, in 15 hrs, 25 min and 34 sec.
This mega event took place in Nur-Sultan, Kazakhstan on 14 August 2022.
An Ironman Triathlon is one of a series of long-distance triathlon races organized by the World Triathlon Corporation (WTC), consisting of a 2.4-mile (3.86 km) swim, a 112-mile (180.25 km) bicycle ride and a marathon 26.22-mile (42.20 km) completed in that order. It is widely considered one of the most difficult one-day sporting events in the world.
Nagaraja was diagnosed with AS in 2012, after suffering for 13+ years. His journey to running/fitness started in mid-2017 when the pain due to AS intensified again. Despite not being into sport as a child, he took up running, along with other regular exercises, with consultation from a Rheumatologist. After 6 months of practice, he completed his first 10km run in October 2017. From there, he built up his strength and completed his first full marathon, (42.2km) in January 2020.
Determined not to let the three-month lockdown affect his fitness, Nagaraja ran indoors, clocking up 767kms. In 2022 he participated in his first multi-sport event, the Kolhapur Bergman Duathlon (Running-Cycling-Running). He became inspired to learn to swim and in less than two months swam 3km. In May 2022 he registered for the Kazakhstan Full Ironman.
In the Ironman, he finished the 3.8km swim in 01:52:17, 180km cycle in 07:28:36, and 42.2km run in 05:41:01 – with a total time of 15:25:34.
His journey is inspirational – don’t let AS limit your dreams!
Dr Pramod Palekar – Physiotherapist & Guest Speaker, Pune Seminar 2018
Ankylosing Spondylitis Welfare Society(ASWS), a patient-led organisation was established in 2020 to support fellow AS warriors and their caregivers across India. Being patients, we realised that mostly patients consult their local doctors, Orthopaedic Surgeons or focus on alternate therapies rather than visiting a Rheumatologist due to lack of awareness about Ankylosing Spondylitis and Rheumatology, in general. This leads to delay in diagnosis amongst the patients causing mobility issues, permanent disability and mental health problems.
We aim to create a referral pathway so that various specialisations can help patients identify AS early and guide them to a Rheumatologist who can guide them in the right direction and help them deal with the disease effectively.
To create awareness about the disease amongst the general population we are taking efforts to collaborate with various schools/colleges/offices/corporate houses/hospitals. We are also organising various seminars, webinars with various medical faculties and using social media to help us spread the word. We are hopeful that this will help in early diagnosis so that AS does not remain an invisible illness, as it currently is.
Patient Audience, Pune Seminar, 2019
AS not only causes joint pains but also leads to other co-morbidities as well. Many people are unaware that AS requires a multi-disciplinary approach. We are trying to make people recognise various manifestations of the inflammation so that they are better able to understand their illness through other symptoms than just aches and pains.
As India is a very diverse country with various cultures, economic disparity, role expectations and demands, we want caregivers to realise the depth of the disease and the changes – both physical and psychological – that a warrior faces. At the same time, we understand that it is not easy for the caregivers to accept this sudden change in their “healthy” loved one and want to provide a listening ear to them as well so that they have someone to share their concerns and fears. We aim to help the family and the patient deal with the disease jointly and understand that no obstacle is hard to overcome if we are in it together.
Also, we want to provide a platform for female AS warriors to be able to share openly, with us, about their intimate problems – be it family expectations, marriage, work, conception, pregnancy, child care, periods, mood swings, or, being told that women don’t get AS and they are exaggerating or lying about their symptoms. We want them to know that they have a reliable confidante in us and they can share all their concerns uninhibitedly and seek guidance in any matter of their concern.
Dr Shashank Akerkar – Rheumatologist & Guest Speaker, Dr Pravin Patil – Rheumatologist, Founding Member, Trustee & Medical Advisor ASWS, Webinar, 2020
In India, specifically in rural areas, one of the biggest problems that warriors face is not being able to afford even NSAIDs to suppress their pain to a bearable limit. Many patients are diagnosed, yet, are helpless as they can’t afford basic medical treatment. Their families helplessly watch them deteriorate gradually. AS is not covered under any insurance in India, pushing many into dark oblivion. We want to fight for this basic human right so that most have the opportunity to fight this illness and not have their financial condition determine their destiny. Until we are able to achieve this, we want to facilitate support through various other charitable and funding sources to help them achieve their treatment objectives.
Overall, ASWS strives to provide AS warriors with proper guidance and support during this difficult process so that they don’t suffer due to Ankylosing Spondylitis being an invisible illness. We wish that ASers are treated with respect, compassion and empathy by general public and medical professionals around them so that they are able to live a respectful and fulfilling life.
The IMAS survey has now closed with a total of 5,557 participants from five continents. The data are now being analysed and the first results have been shared with the IMAS sub- and scientific-committees.
Our members have been invited to a meeting on 22 September to discuss the results, how they will use them within their own organisations, and the key messages shown.
This meeting is an opportunity for our members to have their say on how the IMAS results could be presented and used.
If you haven’t yet registered for a session, please email Jo Lowe (projectmanager@asif.info) stating which session you will attend – 08:30-10:00 BST or 16:30-18:00 BST.
