Patient Stories

Pravin Chetty (South Africa)

I was born and grew up in the coastal city of Durban, South Africa (SA) in 1967. The British indentured Indians in the late 1800s to work the sugar cane fields. Despite the oppressive Apartheid Laws affecting Black South Africans, I was able to study a Bachelor of Science degree with majors in Geology, Geography & Geo-Economics & later studied Mining Engineering. Some years later, I qualified with an MBA, with my thesis focussed on mine risk management. My training considered, I was employed in the SA mining industry, on both gold and coal mines (I know dirty stuff). In 2008, I was appointed as the General Manager of the 3rd largest coal mine in SA, and have held various board appointments since then, until my Autoimmune diagnoses. I had also been a serving council member of the SA Colliery Managers’ Association and a Government appointed examiner of the Government Certificate for Mine Managers. I am an accredited Mine Risk Auditor and have audited operations in Australia, Sub-Saharan Africa and the USA. I have presented various mining related papers at symposiums and conferences.

Thus, began this somewhat daunting, yet fortuitous journey with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). In 2021, shortly after a Gastrectomy due to Gastric Cancer, I was recovering well. I received the 2nd jab of three for COVID, but shortly thereafter, started experiencing seizures. In January of 2022, I was rushed, in a semi-comatose state, to the Emergency Room, some 120Km from home. It took a team comprising a Neurologist, Surgeon, Oncologist and my Physician 6 months to diagnose with CIDP. I spent most of this time in ICU, having to endure 3 resuscitations. Not that I’m ungrateful, as they worked with the info they had. I am still recovering, 2 years later, still wheelchair bound, but able to walk unaided for about 30m.

My real interest lies in support for caregivers and family. Sometime during my internment in the hospital, my Neurologist informed my spouse that I had 48 hours to live and suggested that family be gathered. My youngest daughter, at university some 1500 Km away, in Cape Town, was summoned to Pretoria. I can’t imagine how deflating it must have felt like for a young, immature undergraduate to make the long journey to bid her father farewell. 

The Foundation’s Mission which incorporates Support, Education, Research, and Advocacy, is especially appealing to me. Discussion with my Neurologist has enlightened me that South African medical professionals are limited in their knowledge of GBS & CIDP and that the afflictions aren’t even considered at SA’s medical universities. The knowledge base thus resides with those professionals who can afford to attend international symposiums and conferences. Hence, I intend to advance the knowledge around CIDP through collaboration with the US-based Foundation. Shooting from the hip, I have registered an NPO called CIDP SA. Having close ties to corporate mining companies, I already have pledges of approximately $3OK.

Further, my 6-weekly IVIG & physiotherapy sessions have enabled me to start walking short distances, albeit still a fall risk, and my aim remains to proudly walk into the hallowed halls of the next international GBS-CIDP Foundation symposium.

Like the wonderful people of the “global” Foundation, my desire to make a difference is stronger than my doubts, in the knowledge that others (you) have done and will do remarkable acts to enhance Support & Research into GBS/CIDP & MMN.

To all other patients, I offer “have a physical, mental, heartful and soulful approach to your recovery”.

YOU CAN BEAT THIS!!!

Norman Cousins wrote “the great tragedy of life is not death, but what we allow to die inside of us while we live”.