Month: April 2018

International Map of Axial Spondyloarthritis

The International Map of Axial Spondyloarthritis (IMAS) is a research initiative assessing the impact and burden of axial spondyloarthritis (axSpA) from the patient’s perspective.

Developed by people living with axSpA, for people living with axSpA, the aim of this national and international collaboration is to generate insights into the real-life experiences of people living with the condition. Ultimately, these insights should support people living with axSpA in speaking up about their condition to help shape discussions towards improving quality of life.

Launched in June 2019, the European data from the IMAS survey included 2,846 people diagnosed with axSpA from 13 countries. Key findings from the IMAS survey include:

  • Despite improvements, diagnostic delay is still too long: people living with axSpA suffer a delay in diagnosis of over 7 years
  • Active disease limits professional opportunities: 74% of people surveyed living with axSpA reported difficulties finding a job due to the condition, 56% were forced to take sick leave and 45% had difficulties in fulfilling their working hours
  • Symptoms appear during prime of life: on average, people surveyed living with axSpA began experiencing disruptive and debilitating symptoms at around the age of 26
  • Despite fear of losing mobility, pain and disease progression: 1 in 3 people surveyed living with axSpA had never discussed their treatment goals with their doctor
  • Co-creating solutions with all stakeholders will improve quality of life and standard of care for people living with axSpA
  • Expanding the axSpA patient voice We are pleased to announce that seven abstracts have been presented at this year’s Annual European Congress of Rheumatology (EULAR 2019). Please find key information below:

    This announcement comes after previous abstracts were presented at the following:

Professor Marco Garrido Cumbrera, University of Seville, Spain led this exciting project with assistance from ASIF, the Health and Territory Research (HTR) group of the University of Seville, the Spanish Coordinator of Spondyloarthritis Associations (CEADE), medical experts, plus funding and support from Novartis Pharma AG.

The IMAS survey is currently being expanded, the next phase will include results from additional countries in Europe, North America, Latin America and Asia Pacific later this year.

ASIF 13th General Council Meeting

The 13th General Council Meeting was held in Guangzhou, China on 10-13 October 2018. We thank Dr Jieruo Gu and her team for hosting us and for all their assistance in making the event so successful.

We had delegates from over 20 countries. Our speakers were all excellent and the workshops lively. This year we invited members to

each give a presentation about their work or a particular aspect of it. This was hugely well-received, delegates had many questions for each other. This is definitely something we will build on and include at the next Council Meeting.

The full Report can be downloaded here.

 

 

 

 

 

Welcome to new member – Israel

At a meeting of the Trustees in January 2019, the application from INBAR, Israel was approved.

INBAR is the Israeli Association for patients suffering fro rheumatic, autoimmunie and inflammatory diseases. It was founded in 1985 and in recent years has increased the number of activities related to AS. They work hard to raise awareness among the medical professions and patients.

We look forward to working with INBAR.

Welcome to new member – Ukraine

In November the Trustees approved the application from the Ankylosing Spondylitis Organization of Ukraine ASOU “Ankylosis.net”

This is a very new organisation set up by Irina Bublik and her colleagues and formalised only in July 2018.

Irina was diagnosed 8 years ago. She is a Pilates teacher and has studied the effects of exercise in rehabilitation for AxSpA patients.

We look forward to working with Irina, and her colleagues at ASOU.

Irina Bublik

Ankylosing Spondylitis vs Axial Spondyloarthritis (AS or axSpA)

ASAS has for some years referred to our group of diseases or conditions as Axial Spondyloarthritis. Many think that the term Axial Spondyloarthritis is more inclusive and covers the full range of people suffering with related conditions.

There is some debate now as to whether ASIF, as an umbrella organisation, should consider changing its name to Axial Spondyloarthritis International Federation. Luckily for us, that means the acronym ASIF would remain the same.

The Netherlands have already made the change to Stichting Axiale SpA Nederland and we know that other patient associations eg NASS are considering making the change.

This also applies to World AS Day – should it be World Ankylosing Spondylitis Day or World Axial Spondyloarthritis Day? Again, the logo would remain the same – World AS Day.

This is one of the issues that we are going to discuss at the ASIF Annual General Meeting which this year will take place in Madrid (during EULAR) on 12 June 2019.

If you have any thoughts about this, please email Jo at office@asif.info

Intimacy and AS

Michael Mallinson has lived with AS for over 35 years. He developed this content as a consultant to Novartis Pharmaceuticals Canada Inc.

No payment was received.

Let’s not hold back on this. You’ve got Spondyloarthritis and your back and some of your other joints hurt, a lot. You’ve also noticed that you’ve lost some flexibility and simply can’t get into the positions you used to be able to. Furthermore, what with the fatigue and bouts of depression, you don’t feel like doing ‘it’. But you are still young and you know it’s healthy for couples to have regular sexual intercourse. What’s to be done?

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