Walk Your AS Off is a virtual walk event to get moving and raise awareness for axial spondyloarthritis.
We encourage you to “Walk Your A.S. Off!” in order to stay active and to keep your joints working as well as possible.
Most people with axSpA benefit from regular exercise. Unfortunately, many of us don’t exercise enough.
Walking is a fantastic form of low impact exercise – so let’s get moving!
Join our global community – there are teams from all over the world! You can participate as an individual or create your own virtual team and start counting and logging your steps.
We know that the current situation is difficult and not ideal for long walks but even walking around the block just to keep moving will be perfect!
For more details on: Why do we Walk?Who can participate?Why have teams?How do I sign up?How can I make a team?When do I log steps?How can I find out more information? and Resources
In order to help everybody, members and researchers have created detailed pages on their websites as a support during these extreme times. We hope they can contribute to ease the pressure by becoming a powerful tool helping to spread knowledge. Here below you will find links to specific pages.
NASS the National Axial Spondyloarthrithis Society in England presents: a low, medium and high risk assessment to give another tool.
Medicines and Biologic therapies with: highlights on Glucocorticoids, Conventional DMARDs, Non-steroidal anti inflammatory drugs (NSAIDs) and Biologic therapies in relation to covid-19 .
For Mental Health support see the section on how to manage
Rheumatologist and spondyloarthritis expert Dr. John Reveille, Chief of Rheumatology focuses on if having Axial Spondyloarthritis put you at greater risk for Covid-19 ?
For more detailed aspects in terms of conduct, prevention, safety, state of research as per CDC and mind-body relaxation techniques see the question and answers section
EULAR
In light of the
ongoing situation around COVID-19, EULAR has taken the following
actions:
Text for translation: See pdf and word documents attached
The text can be translated in either written format to accompany the video, or placed in the video directly
The written format can be placed with the video on a website page, or produced in a Word or pdf document for circulation together with the website link
Please do not use the EULAR logo on your webpage or in any documentation you produce around the translation
Please refer to EULAR in writing only, using the following sentence: ‘Translated from the original version in English produced by the European League Against Rheumatism, EULAR, March 2020’
If the video is required in original format to embed the subtitles, please contact communications@eular.org
Disclaimer:
The disclaimer is embedded in the video and does not need to be translated
Branding The EULAR Guidance for patients about COVID-19 is an official EULAR product and may only be used in line with the guidelines set out above.
EULAR Policy
statement and specific questions around COVID-19
If your organisation
requires further information regarding topics mentioned in the policy
statement, please contact publicaffairs@eular.org
Novartis believe it is vital to provide enhanced funding to help patient communities globally impacted by the outbreak to provide vital services to patients. Novartis will prioritize funding requests addressing immediate needs of patients stemming from the pandemic. As examples, we will consider proposals for programs that:
Provide information on COVID-19 or related topics.
Enable patients to access their HCP online or virtually, to ensure continuity of care and disease monitoring, remotely.
Deliver support to manage incremental demand of calls related to COVID-19 and disease management (call centers enhancement).
Facilitate digital approaches for patients and caregivers support and education as well as program that strengthen the community’s digital capabilities to reach patients.
If resources are needed for Covid-19 related programs such as those above, please reach out to your local Novartis patient advocacy contact who will manage – if you need help to find out who that is, please contact Jo Davies on office@asif.info
If you wish to find more information about how Novartis is working during this time, please visit Novartis
Boehringer Ingelheim said more information about their clinical trials is available as well as an update about their contribution to fighting COVID-19 They are also providing under publicly available information which has been developed by Patient Organisations, Scientific Societies, governmental and non-governmental organisations in different countries about the virus which you or your community might find helpful.
The UCB contact to use for any questions or concerns patients from your community may have, is provided through the UCB Cares service GlobalMI-Content@ucb.com
Registration is now open for the Global Spondyloarthritis Summit 2020
Save the dates, 1-7 May 2020, for the SAA’s 2nd Annual Global Spondyloarthritis Summit. This year’s virtual Summit will feature 12 international experts presenting on topics such as pain management, advances in treatment options, diet & nutrition, exercise, progress in research, medicinal cannabis, and more.
There is no cost to register and participation is strongly recommended for anyone impacted by axial spondyloarthritis, whether it is you or a loved one.
This year the videos will come with subtitles in the following languages: Spanish, Ukranian, French, Italian, Bulgarian, Russian and Chinese.
“Our mission is to create a secure, de-identified, international case reporting registry and curate and disseminate the outputs from that registry.”
This registry will facilitate our primary goals, which are to:
Understand the outcomes of patients with rheumatologic conditions who develop COVID–19 infection and the influence of their comorbidities and medications on their outcomes.
Understand the influence of rheumatologic medications, such as hydroxychloroquine, on the outcomes of patients who develop COVID–19 infection.
We are interested in all cases, from asymptomatic to severely affected.
We aim to be able to provide information back to doctors, patients, and researchers about how rheumatic disease patients and those treated with rheumatology drugs fare when they get infected. Data collected will potentially provide valuable information going forward to help make decisions about how to direct further studies and treat our patients.
There is a physician-entered data registry, now prominently displayed on the home page of the website at https://rheum-covid.org.
To maximize the registry’s use and impact, we are asking that organizations share the registry with their members via as many methods as possible, such as:
Adding The COVID–19 Global Rheumatology Alliance to their websites.
Emailing their members.
Advertising the registry in their publications.
Sharing information via their social media. platforms such as Twitter and Facebook. Please tag us with our Twitter name @rheum_covid, and consider using the Twitter hashtag #Covid4Rheum.
To further simplify this process, we have attached a few images designed for easy social media sharing and you should feel free to use these freely.
Thank you again for your support, The COVID–19 Global Rheumatology Alliance team
(If you would like to be added to the Global Rheumatology Alliance mailing list for future updates, please follow this link and they will get you added.)
At the recent AGM, members voted to change the name of ASIF to:
Axial Spondyloarthritis International Federation.
Why? Because MRI can detect our disease much earlier than x-rays can, leading to people being diagnosed with Non-radiographic axial Spondyloarthritis, or nr AxSpA. Nr AxSpA has all the features of Ankylosing Spondylitis except for radiographic confirmation of sacroiliitis. We wish to serve everyone with Axial Spondyloarthritis, not just those with radiographic Axial Spondyloarthritis (ie Ankylosing Spondylitis).
The term axial Spondyloarthritis has been in use for over 30 years and in 2005 the Assessment of Spondyloarthritis International Society (ASAS) started using new classification criteria which used only the terms non-radiographic axial Spondyloarthritis and radiographic Axial Spondyloarthritis. It has taken years for the terms to be used in clinical practice, but increasingly people are being diagnosed with Axial Spondyloarthritis rather than Ankylosing Spondylitis.
ASIF is proud of showing leadership in embracing all patients with either form of Axial Spondyloarthritis.
This infographic explains the different terms: download here
One to explain the more recent terminology around Axial Spondyloarthritis, nr-asSpA and Ankylosing Spondylitis.
The second to explain some of the statistics around Women and AxSpa. Women continue to be misdiagnosed because in many countries it is still incorrectly believed to be a disease that affects mostly men.
These infographics are available to be produced in other languages for members. If you can produce the translations, we can help you to get this infographic created in your language to share with your members. If you would like to explore this, please contact Jo on office@asif.info
Online exercise videos for AxSpA/AS and other arthritis patients
That exercise is important for people with AxSpA/AS and other rheumatic diseases is repeatedly confirmed in scientific studies. However, various studies have shown that many sufferers are unable to take part in a group therapy course due to time constraints and geographical reasons. The Ankylosing Spondylitis Association of Switzerland (SVMB) has now launched the Rheumafit platform in collaboration with the Zurich University of Applied Sciences (ZHAW). Rheumafit is ideal for use at home but can also be used in a group setting.
Rheumafit is now available in English as well as French and German!
Various exercise
programmes suitable for people with Axial Spondyloarthritis and other rheumatic
illnesses can be found online at www.rheumafit.ch.
Each exercise comes with a video illustration and written on-screen instructions, plus important hints for training at home. Each exercise program indicates its purpose, the duration (most are under 20 minutes), the intensity, the targeted body parts as well as alternatives or variations to the main exercise.
Filters allow you to select the duration and intensity of your
exercise programme as well as on which part of the body you want to
concentrate. Rheumafit can automatically suggest those exercise programs that
best fit your profile. The programs can be accessed from any device connected
to the Internet, be it a smartphone, a tablet, laptop or an Internet-capable
television set (Smart TV). More than 20 exercise programmes are available. You
can register for Rheumafit for free at www.rheumafit.ch/signup.
Rheumafit’s exercise programs were developed in close cooperation with Prof. Karin Niedermann, head of the masters’ program in physiotherapy at the Zurich University of Applied Sciences (ZHAW) and consulting physiotherapist at the Ankylosing Spondylitis Association of Switzerland (SVMB). She encourages those living with AxSpA/AS to train with the help of online videos: “Rheumafit is an excellent support tool for individual training. It enables the patient to train for strength, endurance, mobility and coordination two to three times a week. This also corresponds to international movement recommendations, which are effective, safe and feasible for people suffering from rheumatism. If pain occurs during the exercises, you should talk to your physiotherapist to find a suitable selection of exercises.”
Focusing on the key essentials you need to know, Axial Spondyloarthritisprovides a quick, expert overview of axSpA from a clinical perspective. This concise resource by Drs. Philip Mease and Muhammad Khan presents practical recommendations and guidelines for the diagnosis, management, and treatment of spondyloarthritis impacting the axial skeleton alongside an overview of epidemiology, special populations, and patient education.
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:
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.
The Trustees approved an application from Walk As One to join ASIF at their meeting in September 2019.
Their President and founding member, Ricky White, was diagnosed with AS in 2010.
Walk AS One was created in 2015 after the continued success of the social media campaign Walk Your AS Off. Walk As One is a global community that raises awareness by encouraging exercise and team activities.
Welcome to Walk AS One, we look forward to working with you.
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:
