Talk to be Heard

There are between 25 to 54 million people who live with axSpA globally, with an average wait time of seven years for an accurate diagnosis1-3,9. After years of living with the condition, it can be natural for people living with this disease to stop talking about how axSpA affects them – with their loved ones or even their rheumatologist4.

Together, Novartis and ASIF aim to change the dialogue between people living with axial spondyloarthritis (axSpA) and their support system, from friends and family, to their rheumatologists and other caregivers. Through Talk to be Heard, we hope to provide a space that:

  • Inspires people living with axSpA to speak openly about their disease beyond symptoms
  • Validates the experience of those living with axSpA, showing them that they are not alone and are part of a worldwide community
  • Fosters confidence through community and encourages people with axSpA to have honest conversations with their doctors and loved ones
English (UK)

AxSpA is a life-long inflammatory arthritis, where the primary symptom is back pain. AxSpA is an umbrella term that includes non-radiographic axial spondyloarthritis (nr-axSpA) and ankylosing spondylitis (AS).

Find out more about the impact and burden of axSpA from the perspective of people living with the condition here.

Make the time to talk about your axSpA. Talking through how it affects you with your rheumatologist and / or a loved one is an important step to take in prioritising yourself and your health. Talk to be heard!

  • Because by talking to your rheumatologist about the realities of your axSpA, you can work together to improve your care
  • Because being open and honest with those who love you can help make life easier when you’re struggling
  • Because by sharing your experiences, you could help others living with axSpA too

Living with axSpA

Due to the way axSpA affects a person’s body, it can have a devastating impact on all aspects of everyday life, particularly when it comes to work, family, and relationships3,5-8.

Explore the stories of people living with axSpA below.

Emotional Impact of axSpA

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Personal Goals and axSpA

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Working with axSpA

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Relationships

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How to Talk to be Heard

Talking about how axSpA affects you with your rheumatologist and loved ones can be hard.

Did you know that one third of people living with axSpA had not discussed their care goals with their doctor?3

The Talk to be Heard discussion guide provides practical advice on how to handle these conversations. By talking openly about the realities of your axSpA with your rheumatologist, you can work together to improve your care and help your family and friends to support you.

Download this guide, available in a range of languages, for support in how to effectively communicate the impact of axSpA on your everyday life to loved ones and to your rheumatologist.

Download PDF
English (UK)
Download PDF
English (UK)

Guidance for engaging with the campaign

Starting in February 2022, we are launching a 9-week social media campaign encouraging people with axSpA to talk about how their condition affects them.

Keep an eye out for posts on Facebook, Instagram and Twitter with the hashtag #axSpATalktobeHeard. These will provide a forum to reflect on and share your experience with others. Each week we’ll share a new theme to start the conversation.

If you’d like to choose your own discussion topics about your experience living with axSpA, be sure to use #axSpATalktobeHeard when sharing.

Talk to be Heard! Making the time to talk about your axSpA is a crucial step in prioritising yourself and your health.

Join the global conversation

Please tag @asif.spondylitis and use #axSpATalkToBeHeard on Facebook. On Instagram or Twitter, tag @ASIntFed or use #axSpATalkToBeHeard to join the global conversation. Your posts and tweets may feature on our social media wall below alongside others from the global axSpA community.

Talk to be Heard on Social!

If you aren’t on Facebook, Instagram or Twitter, you can still join the conversation. Simply scan the QR code on your smart phone, write your message, and it will appear below! Join the global conversation and Talk to be Heard!

Our Community Guidelines for Social Media

ASIF’s Facebook, Instagram and Twitter pages are inclusive, positive spaces where we encourage people to share their experience of living with axSpA. Please be kind, supportive and encouraging to others.

To keep our pages as positive and safe as we can…

• Inappropriate or discriminatory comments will be removed
• Please refrain from offering health and medical advice, or naming specific medications
• Avoid political or religious viewpoints
• Posts must follow Facebook’s posting guidelines and Terms of Use

Posts that don’t follow these guidelines may be removed.

Cyber Safety

• When sharing your experiences and opinions, be careful not to share identifiable information, such as your address.

Please contact communicationsmanager@asif.info with any questions.

Talk to be Heard is independently endorsed by the following patient organisations, who are ASIF members and participating in this important campaign.
References:
  1. Jacquemin C, Maksymowych WP, Boonen A, et al. Patient-reported Flares in Ankylosing Spondylitis: A Cross-sectional Analysis of 234 Patients. J Rheumatol. 2017;44:425-430.
  2. Stolwijk C, van Onna M, Boonen A, et al. Global Prevalence of Spondyloarthritis: A Systematic Review and Meta-Regression Analysis. Arthritis Care Res (Hoboken). 2016;68:1320-31.
  3. 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. 2019;21:19.
  4. Novartis Data on file: axSpA Market Research. Last accessed November 2021.
  5. Garrido-Cumbrera M, Bundy C, Navarro-Compan V, et al. Patient-reported Impact of Axial Spondyloarthritis on Working Life: Results from the EMAS survey. Arthritis Care Res (Hoboken). 2021.
  6. Garrido-Cumbrera M, Navarro-Compán V, Bundy C on behalf of EMAS Working Group, et al. SAT0374 ONSET OF AXIAL SPONDYLOARTHRITIS REPERCUSSIONS ON PATIENTS’ SOCIAL AND FAMILY LIFE: RESULTS FROM THE EUROPEAN MAP OF AXIAL SPONDYLOARTHRITIS (EMAS). Annals of the Rheumatic Diseases 2020;79:1134-1135.
  7. Garrido-Cumbrera M, Galvez-Ruiz D, Gossec L, et al. Psychological Distress in Patients with Axial Spondyloarthritis in Europe. Results from the European Map of Axial Spondyloarthritis Survey [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 10). https://asif.info/wp-content/uploads/2018/04/ACR-Psych-Distress.pdf.
  8. Mease PJ, Heijde DV, Karki C, et al. Characterization of Patients With Ankylosing Spondylitis and Nonradiographic Axial Spondyloarthritis in the US-Based Corrona Registry. Arthritis Care Res (Hoboken). 2018;70:1661-1670.
  9. United Nations. World Population Prospects 2019 Highlights

The campaign was developed through a collaboration between Novartis Pharma AG and ASIF
December 2021 I 173402

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