GARDEN ROUTE NEWS - The Axial Spondyloarthritis Association of South Africa (Asasa) proudly celebrates a historic milestone as its founder and chairperson, Maranda van Dam, from Great Brak River became the first patient research partner in Africa, recognised by the European Alliance of Associations for Rheumatology (Eular) School.
Diagnosed with axial spondyloarthritis (axSpA) in 2016 after an 8.5-year diagnostic delay, Van Dam transformed her personal struggle into a powerful force for change.
In 2018, she founded Asasa, initially as a private Facebook group to connect and support those living with axSpA. Today, Asasa has grown into a vibrant community of over 1 000 members, offering a safe space for patients to share experiences, access resources and find empowerment.
Under Van Dam’s leadership, Asasa has trained 350 physiotherapists, 150 optometrists and 100 general practitioners to improve early diagnosis, addressing South Africa’s average diagnostic delay of 10.8 years.
Van Dam’s advocacy extends beyond South Africa.
As a former trustee of the Axial Spondyloarthritis International Federation (Asif), she contributed to global initiatives like the International Map of Axial Spondyloarthritis (Imas), surveying over 5 500 patients across 27 countries.
Her research contributions include abstracts presented at the 2023 Aflar Conference in Nairobi, focusing on diagnostic delays and mental health challenges in axSpA patients.
Asasa’s efforts were honoured with the Eular Best Practice Award in 2023 and recognition at the Eular Pare Congress 2022, alongside Van Dam’s Academic Excellence and Recognition Award at the Saraa Congress 2024.
As Africa’s first patient research partner, Van Dam brings the patient voice to the forefront of axSpA research. She is driving systemic change to improve access to treatment and support.
axSpA is a chronic inflammatory condition primarily affecting the spine and sacroiliac joints, causing persistent back pain, stiffness and fatigue. Often misdiagnosed, it can lead to significant delays in treatment, impacting quality of life.
Early detection is critical for effective management. The five key signs to watch for include:
- Pain that keeps you up at night or causes early morning stiffness.
- Back pain starting before age 40.
- Pain that improves with exercise, but not with rest.
- Chronic back pain lasting more than three months.
- Fatigue or discomfort in the lower back or buttocks.
To get hold of Maranda, e-mail: info@axspasa.org.za
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