The GBS | CIDP Foundation South Africa is an Allied Partner of GBS | CIDP International. We are committed to improving the lives of those affected by Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN), and related conditions through support, education, research and advocacy, uniquely curated for the diversity of all South Africans.
“Our goal is to help build a connected and empowered community with greater access to resources, ultimately helping to improve the quality of life of all those affected.”
Founder/Director
Whilst recovering from a Distal Gastrectomy for Gastric Cancer in 2021, I was hospitalised, mainly in ICU, for 7 months, and eventually diagnosed with the rare, incurable Autoimmune disease called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).
Considering 1st world statistics noted an affliction rate of anywhere between 0,01 and 0,09 per 100 000 people, I recognised that South Africans were largely misdiagnosed or undiagnosed, and that the vast majority attending public hospitals were being treated with harmful Corticosteroids, as opposed to the Plasma treatments I received.
Despite being wheelchair bound, I recognised a dire need to create awareness of the disease, have a support structure for patients and caregivers, foster education and research opportunities, and lobby law-makers. I thus established the NPO GBS-CIDP SA, to deal with these shortcomings.
Director
Diagnosed with CIDP in 2024, my complicated journey has given me first-hand insight into the fears and challenges of navigating a rare and often misunderstood condition, including the physical, emotional and practical impact it has on individuals and their families.
This experience has fuelled my commitment to raising awareness, improving access to reliable information, connecting individuals and families with appropriate support, and advocating for improved treatment and care.
Director
I went 15 years before I was properly diagnosed with CIDP in 2025. The better I understand this condition, the more obvious it is to me that a huge number of South Africans are living with auto-immune conditions and suffering – undiagnosed and without treatment.
With the guidance of the good people at GBS | CIDP Foundation International, my personal mission is to help get as many people properly diagnosed, registered and educated about how to live with, and manage these related conditions.
Director
I am a biokineticist and co-owner of Holistic Kinetics and Coetzee and Van Heerden Biokinetics, with the past 10 years of my career dedicated to the rehabilitation industry.
My clinical interests lie particularly within neurological rehabilitation, with a special interest in neurodegenerative and inflammatory-based conditions. I also have a strong interest in pain and chronic pain management, using a multidisciplinary and patient-centred approach that incorporates techniques such as hydrotherapy and NeuroKinetic Therapy.
Working in rehabilitation has given me the privilege of spending significant amounts of time with patients and their families. This has allowed me to see not only the clinical challenges people face, but also the challenges they experience in navigating healthcare systems, understanding their conditions, communicating their needs and advocating for themselves.
Director
I was diagnosed with CIDP in 2016. I felt so alone and had so many questions which doctors could not answer.
I have had various other treatments other than IVIG over the years and along with them came other serious side effects. I am hoping that whoever lands on this page looking for answers is able to find what they need by reaching out to us. Anxiety caused by the shock of your diagnosis, to the ongoing daily battles, can be as hard to overcome as the disease itself. Having support will help you navigate this road which at times will be filled with bumps and potholes.
“If you could walk a mile in my shoes, you’d be crazy too.’ Tupak Shakur
INKOSI ALBERT LUTHULI CENTRAL HOSPITAL
