About World AS Day

 
ASIF presents World AS Day as an annual day dedicated to people with Axial Spondyloarthritis (axSpA). It is celebrated across the world on the first Saturday of May. On World AS Day, our member associations and their supporters organise activities around the world to raise awareness of axSpA, including Ankylosing Spondylitis (AS).  ASIF has 44 Patient Organisation Members from 40 countries around the world.

Aim of World AS Day
World AS Day is dedicated to people living with Axial Spondyloarthritis. AxSpA is a rheumatic inflammatory disease primarily affecting the spine and sacroiliac joints, also called ‘Morbus Bechterew’ in some European countries. You will find this popular name of the disease in the name of some European AS societies.

On the first Saturday of May, we aim to address their needs through:

Raising awareness
Axial Spondyloarthritis affects millions of people around the world. 
The aim of World AS Day is to raise the profile of this disease and increase awareness of the effect it has on people’s lives as it impacts not only physical but mental health as well.

Sharing information
Axial Spondyloarthritis is still a relatively unknown disease. On World AS Day, we spread information about  AxSpA to raise awareness.

Connecting with each other, being together
We want this day to be one where we all connect with each other to support and care. This can be anything from joining a virtual event, reacting to people’s social media posts or sharing your own stories with people in your communities.

World AS Day 2020 Theme

This year’s  World AS Day theme is TOGETHER – axSpA and mental health

Our aim is to raise awareness of how the disease affects patients’ mental health. According to research data from Europe, 6 out of 10 people living with axial SpA will experience mental distress.*

*[Garrido-Cumbrera, M., Poddubnyy, D., Gossec, L. et al. The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries. Curr Rheumatol Rep 21, 19 (2019). https://doi.org/10.1007/s11926-019-0819-8]

TOGETHER – axSpA and mental health

People with axSpA often have mental health support needs

  • 6 out of 10 people living with axSpA will experience mental distress. Together we can help each other.
  • Having axSpA can affect your emotions. Together we can help each other.
  • Does having axSpA affect how you feel about yourself?
  • Do you worry about your ability to manage stress or anxiety?
  • When axSpA gets you down, what support do you need?
  • You are stronger, not weaker if you recognise and manage your mental health.
  • Exercise, meditation and other activities can really help with depression, stress and anxiety.
  • How well does your healthcare provider support your mental as well as physical health?
  • Are you aware how mental health impacts medication/treatment efficacy?
  • Did you know your mental health impacts those who care for you as well?

Physical and mental health services need to work together for axSpA patients

  • Clinical characteristics such as degree of disease activity and spinal stiffness are good predictors of psychological distress.
  • Everyone Together: primary carer + rheumatologist + psychologist + physiotherapist + family + friends ++
  • Speak up! There is a disconnect between what patients need from their treatment and what they are communicating, so patients are not getting the treatments they really deserve.
  • Patients with poor mental health have a higher BASDAI score.
  • Depression and anxiety can negatively influence the response to treatment.
  • You should ask your rheumatologist to make referrals to other specialists (psychologist, dietitian, physiotherapist, orthopedist, occupational therapist) if you consider it important to your health/wellbeing.
  • Members of axSpA patient associations have average better mental health.

Together we can support people to live well with their axSpA

  • Members of associations for patients with axSpA have fewer mental health problems than other patients.
  • Support groups bring together people who are going through or have gone through similar experiences. Together we can help each other.
  • A support group among people with shared experiences may function as a bridge between medical and emotional needs.
  • Patient organization self-management programs teach strategies to help adults manage chronic conditions and live a healthier life.
  • Each individual affected by spondylitis has their own unique story. We believe that each and every story can be a source of inspiration and empowerment. Share yours! We are on this journey together.
  • Patient organisations have apps for exercises to help members to be more active and to motivate them to get outside of the house.

Living well with axSpA involves friends, family, employers and colleagues

  • Talk to your family.
  • Figuring out how to stay working, though, can be one of the most important challenges to people with axSpA.
  • Financial planning can help you to manage changes to your income.
  • According to the IMAS survey 61.5% of people with AxSpA reported psychological distress.
  • Help your family to understand your fears by talking to them.
  • Teach your children about your condition.
  • Family members often do not know how to support their loved one with AxSpA, which can lead to isolation.

RESOURCES

Toolkit

We have created a toolkit that gathers all the information needed for you to join in the World AS Day 2020 campaign. It outlines this year’s theme, key messaging and resources that will help you spread and raise awareness of Axial Spondyloarthritis in the preparation of World AS Day. It will help you navigate all assets listed on this website and give you information on how to use them.

Logo

You can use this year’s logo to support your initiatives.

Join the Dots

World AS Day uses dots to support promotion. This year’s dots are Orange coloured and we encourage you to use them imaginatively. We encourage you to embrace these to raise awareness. You could wear them as face make up, stick dots on your windows or simply share one of our dot art social posts.

Social Media assets

We have created downloadable assets for you to share locally. Some of these are completed with our key messages and others are blank to allow you to prepare your own personal, local messages.

GET INVOLVED

What is Walk Your AS Off?

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! Click below to find out more information and how to take part in this event.

Global Spondyloarthritis Summit 2020

Save the date, May 1-7, 2020, for the Global Spondyloarthritis Summit 2020. This year’s virtual summit features 12 international experts who share insights on the latest research, treatment recommendations, innovations, pain management, advances in treatment options, diet & nutrition, exercise, progress in research, medical cannabis, and topics that matter most for people living with spondyloarthritis. Registration opens soon on spondylitis.org.

World AS Day activities

Each year we organise and promote activities and campaigns that encourage people to join in. An example of such an activity is Walk Your AS Off. It is a virtual walk event to get you 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! And wear your dots!

Be part of  World AS Day!
To be part of World AS Day go to our Resources section where we put together all the information and resources that can help you to join us on this day. Contact your local axSpA/AS organisation to check if they have a campaign or are participating in any events, or even organize something yourself! All ideas and activities that help spread awareness are welcome. We encourage you to use our resources and tag us on social media to let us hear about it! Check with us on Facebook, Instagram and Twitter  to get the latest updates on this year’s campaign and more. 

Remember to focus on the theme and key messages.

Special profile images

We have created a special and simple dot photo tool that will turn your photo into a World AS Day image that you can use as your profile photo on World AS Day. We suggest updating your Facebook profile page image.

Choose a picture you wish to use, add it by clicking on “Choose your photo” below. Then simply click on the “Upload” button and wait for the picture to appear below. Please note that depending on your picture resolution and internet speed it may take up to 60 seconds to load. Once it’s there just click on the photo to download and save to your folder.

We will not be using your images and they are not stored – this is just for you to help raise awareness for World AS Day.


  

GET IN TOUCH

If you have a question or want to share your plans, please get in touch by emailing office@asif.info

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