Published: 21/09/2020

My mission to raise awareness in South Africa

My name is Gafsa Garson and I am known as Gafsa Bux.

I was an operational nursing manager at Groote Schuur Hospital. I started having severe back pain in 2018, I saw a neurologist and an orthopedic doctor, as I was also complaining of severe pain in my hands. The neurologist sent me to a mental wellness clinic as he thought I had a functional neurological disorder, fibromyalgia, and depression. I saw a psychiatrist and psychologist and they both tried to convince me I had depression and chronic pain syndrome.

My condition rapidly declined, both of my hands were affected and I was diagnosed with bilateral carpal tunnel syndrome. I saw a rheumatologist who diagnosed me with hypermobility and osteoarthritis. I had steroid injections in my hands but the pain didn’t go away. I had bursitis in my knee several times and was injected with steroid injections. I saw a pain specialist and had a rhizotomy and neuroplasty for a herniated disc in my lower back.

These procedures did not help. After being diagnosed with more than ten comorbidities, I was declared disabled. The pain specialist referred me to a geneticist in September 2019 and I got diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS), my comorbidities were caused by my hEDS. I was told my prognosis was poor. 

I got medically boarded 30 December 2019 and got no benefits. Since the lockdown started I could not apply for a disability grant as the South African government has suspended new disability cases for months. I live off donations and my 70-year-old father is looking after me and my daughter. All the doctors I have seen were shocked by how my condition deteriorated and they had little knowledge of EDS. I started my own research by joining almost 50 EDS groups. 

I have started an awareness campaign by talking on radios about EDS and living with pain in Cape Town. Even though I live in severe pain and cannot afford my vitamins, I started a pain survivors Whatsapp group. I write with my thumb and have started writing poems, my motto is to never give up! I feed my mind positive thoughts to get positive results and also practice meditation. 

I am bedridden at the moment and mostly use my wheelchair to move around. There are days that I have severe pain as I have polyneuropathy and lumbar nerve damage. I cry and tell myself that tomorrow will be a better day. To all EDS warriors, our pain is real, and believe in your capabilities. If I can do it then other EDS warriors can do it too. 

Have hope and faith and believe in yourself and practice self-compassion. Blessings to everyone.

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