top of page
Search

From isolation to advocacy: Maranda van Dam shares her axSpA journey

Axial spondyloarthritis (axSpA) is a little-known disease with an outsized impact on sufferers – especially if left undiagnosed. Just ask Maranda van Dam, who suffered through many excruciating years of misdiagnoses before she finally gained access to the necessary medical interventions.1 Fueled[KD1]  by this experience, she established the Axial Spondyloarthritis Association of South Africa (ASASA), of which she is now Chairperson.1,2 ASASA is an organization dedicated to raising awareness, education, and support for the estimated 160,0002 undiagnosed South Africans with the condition.1The devastating impact of axSpAAxSpA is a crippling form of inflammatory arthritis that primarily affects the lower spine and sacroiliac joints in the pelvis, causing swelling, stiffness, and debilitating pain. 3-5a Left unchecked, it can result in long-term joint and soft tissue damage, progressively rob patients of spinal flexibility, and potentially spread to other body parts and organs.3,4,5b

 

The condition typically presents itself between the ages of 20 and 45 years,3,4,5c[JW2] [KD3]  and encompasses two main types: radiographic axSpA, also known as ankylosing spondylitis (AS), which is detectable via an x-ray; and nonradiographic axSpA, which may be more evident in magnetic resonance imaging (MRI) scans.3,4,5d Symptoms include back pain that continues for longer than three months, or pain in the hips, buttocks, and neck; fatigue; digestive issues such as pain and diarrhea; and uveitis or inflammation of the eyes.3,4,5e,6,7

 

Van Dam notes that one of the most tell-tale signs is that the back pain and stiffness worsens noticeably at night or in the early morning, and improves [KD4] with exercise and movement.2 She adds, however, that in addition to the scarcity of rheumatologists nationally, the commonplace nature of back pain can further delay diagnosis.2 

 

“Who wants to go to a doctor to say, ‘I’ve got back pain’? Because who in their life doesn't have back pain at some point? You would rather grab an over-the-counter medication,”2 she explains.

“But eventually, before I was on the specialized medication, I couldn't even get out of bed in the morning. I was unable to sit. I was unable to walk. I was in so much pain, which required me to take a lot of very strong medications. That obviously stops you from functioning in your day-to-day life.”2

 

In addition to extreme pain and discomfort, van Dam underwent four unnecessary surgeries because of her misdiagnoses, including a hysterectomy at age 32 – a journey which extracted a heavy emotional and financial toll, making her feel increasingly isolated.2 One practitioner even suggested that her problems were mental, and that she should see a psychologist.2 

 

Turning the diagnostic corner and finding new hope

 

But, once van Dam was finally correctly diagnosed, her life underwent a dramatic transformation.2 Notably, while no cure exists for axSpA, patients can find hope in specialized medications and therapies capable of halting the disease’s progression, easing its symptoms, and ultimately enhancing their quality of life.2-4

 

“Since I’ve had specialized medication and treatment, I’m back to normal now. I exercise almost every day. I do all the things I love and enjoy. I’m able to sort out my children. So, there’s a dramatic difference between patients that have access to the care, and the patients that do not have access to care,” she says. 

Unfortunately, however,[KD5]  international data shows that following the onset of symptoms, undiagnosed sufferers wait up to seven years, or even longer to receive a correct diagnosis.8,9 Determined to prevent other patients from treading the same long, emotional, and painful path of delayed diagnosis, ASASA is extensively involved in training initiatives for healthcare providers.1,2 

ASASA also works in close conjunction with various corporate entities to raise support and public awareness.2 Van Dam is particularly excited about a joint project undertaken with multinational pharmaceutical organization Novartis, which is called IMAS – the International Map of Ankylosing Spondylitis survey.2  

“It's the first piece of [KD6] patient-based research that's ever been done in South Africa. It’s allowed us to streamline our advocacy and take a deep dive into what the actual issues for our patients are, and where we can best support them.”2

Another key milestone for ASASA has been the recent development of a targeted symptom checker.2 Available on the organization’s website, this checker is specifically designed to help individuals suffering from back pain determine whether they may have axSpA, and whether they should consult a healthcare provider for further investigation and assistance.2,10

 

ASASA likewise plays an important advocacy role on behalf of axSpA patients, and is currently leading efforts to have axSpA medications added to the list of Prescribed Minimum Benefits (PMBs) for medical aid members.[KD7] 2 As the medications for the disease can be costly, this will ensure that the expense is covered by all medical schemes, reducing the severe financial burden of the disease.2

 

In response to her various initiatives and patient advocacy work, Van Dam has received multiple awards.2 These include an award of excellence at the EULAR PARE (People with Arthritis/Rheumatism across Europe) Congress in 2022 for ASASA’s work,11as well as the academic excellence and recognition award at the 2024 SARAA Congress where she was selected from more than 36 candidates globally.11

 

However, one of ASASA’s most important roles remains supporting and providing an emotional safety net for patients.2

 

“Our first message to prospective patients is to keep on carrying on until you get the diagnosis; keep on pushing on. And then, for the patients who have already been diagnosed, that there is life at the end of the tunnel. And of course, I want to be an example to all our patients that they can live their best lives, and still do it all,”2 she concludes.

0 views0 comments

ความคิดเห็น


bottom of page