GEORGE NEWS - Axial spondyloarthritis (axSpA), also known as ankylosing spondylitis (AS), is a rare spinal disease with a profound impact on sufferers - especially if left undiagnosed.
Just ask Maranda van Dam, a woman from Great Brak River who suffered through many excruciating years of misdiagnoses before she finally gained access to the necessary medical interventions.
AxSpA 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.
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.
The condition typically presents itself between the ages of 20 and 45 years. Symptoms include back pain that continues for longer than three months, or pain in the hips, buttocks, and neck, fatigue and digestive issues.
According to Van Dam, the most tell-tale sign is that the back pain and stiffness worsen noticeably at night or in the early morning, and improves with exercise and movement.
"Early diagnosis is crucial, but many patients face delays due to the condition's rarity and the commonality of back pain. Before I was on the specialised 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 severe pain which stopped me from functioning in my day-to-day life," she said.
Due to misdiagnosis, and suffering extreme pain and discomfort, Van Dam underwent four unnecessary surgeries, including a hysterectomy at age 32.
No cure, but...
While no cure exists for axSpA, patients can find hope in specialised medications to halting the disease's progression.
"Since I've had specialised treatment, I'm back to normal. I exercise almost every day. I do all the things I love and enjoy and I'm even able to sort out my children," says Van Dam.
Led by Van Dam, the axSpA assosiation of South Africa (AsaSA) is actively involved in training healthcare providers and advocating for improved access to medications for axSpA patients.
They've also developed tools, such as a symptom checker, to aid in early detection and provide support to those affected.
Determined to prevent other patients from treading the same long, emotional and painful path of delayed diagnosis, Van Dam and AsaSA are extensively involved in training initiatives for healthcare providers.
The organisation aims to support the estimated 160 000 undiagnosed South Africans who live with the condition by raising awareness and providing education and support.
Awareness
World AS Day is on Saturday 4 May and will be marked by a fundraiser aiming to raise awareness of axSpA in George and celebrate the resilience of patients. The event will highlight the signs and symptoms, emphasising the importance of early recognition and intervention.
"We will be hosting an event at Lets Play Padel at the George showgrounds from 09:00 onwards."
Participants have to enter mixed teams for a round robin and there will be prizes for the winners. All the funds raised will be donated to AsaSA.
There is also open play for free for the public from 15:30 to 18:00 for anyone who wants to try padel tennis.
For more information, please contact Maranda Van Dam on 082 900 7122 or email chairman@axspasa.org.za.
The fundraiser will be held at the padel tennis courts at the George showgrounds on Saturday 4 May.
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