I have been with Vodacom for 14 years and am currently a specialist in the Tobi Chatbot team and looks after customer experience.

Please give us an overview of your disability and the challenges that it brings to your daily life.

I have what you call rare diseases that are not something you will note when you look at me, but cause challenges and disabilities.  

There are about 7 000 rare diseases (which translates to about one in seven people having a rare disease) – the reality is also if you have one disease there is about 80% chance you will end up with more.

I have a few rare diseases.

I was born with Fibroelastosis of the heart, which means that my heart capacity is impacted. At the moment I have 40% capacity left. This is a paedriatric disease with a life expectancy of about five years. This causes me to battle with tiredness, difficult breathing and chest pains.

I was diagnosed about six years ago with Myasthenia Gravis, which is a neuromuscular disease – my body is fighting itself and this disease means that the messages between my nerves and muscles do not always work, almost like being on an unstable cell network while driving in a mountain pass. The disease impacts my mobility, speech, vision, breathing, brain fog and at times hearing, since this disease targets all voluntary muscles in my body. Every day is different.

Rheumatoid arthritis was diagnosed five years ago, which is causing further challenges with regards to mobility and daily functioning.

I also have Pulmonary embolisms in my lungs, which cause some other issues.

All of these make me a very high risk with the current pandemic and even with my first dose of the vaccine, we are not sure if I will build any resistance against COVID due to the high dosage of immune suppressants I take daily.

One of my favourite memes says the only thing that can try and kick my butt is my immune system.

My daily meds look like a pack of Smarties and as my one colleague always jokes – my medication is delivered either by a long-haul truck or a cargo plane.

How has Vodacom as a company adapted to assist you with your disability?

Since I have a group of medical professionals, I have a lot of doctor appointments – I can go to these appointments without any challenges.

On bad days where I struggle to function, I can ask for time off. If I have days where my speech is badly impacted, I can tell my team and they help out.

The chatbot team has been a great place for me to function in even with my challenges since they don’t exclude me and we work well together. I’m also fortunate to report to Ryno who is accommodating and understanding.

We have a disability forum at Vodacom that provides us with a platform where we can share ideas and get assistance.

I also have amazing colleagues who keep an eye on me – who ask if I remembered to take my medication, tell me to take a break or call me out if I am stubborn and push myself too far.

Which technologies have helped you?

One piece of technology I have experienced that makes a huge difference is the deep brain stimulation device used for Parkinson’s patients. My mom received one of these almost three years ago and the impact it had on her has been amazing. She can adjust the settings herself to help on bad days. This took my mom from being dependent on mobility devices to walking unassisted and having a relatively normal life.

On bad days where I really battle with mobility, being able to use biometrics, i.e. using a fingerprint to unlock a phone, is something small but helpful.

There is also the smartwatch – capturing vitals that we can use to keep our doctors in the loop, especially during COVID, and video calling – keeping us in touch with our medical team when we are not able to visit them.

Bluetooth-enabled smart inhalers have been developed. A small device is attached to the inhaler which records the date and time of each dose and whether it was correctly administered. This data is then sent to the patients’ smartphones so they can keep track of and control their condition. Clinical trials showed that patients using the smart inhaler device used less reliever medicine and had more reliever-free days.   

Another one is precision medicine that will allow the targeting of specific genes and protein, and will reduce symptoms.

What do you wish able-bodied people did more of/less of for people who have a disability – at home, socially and in the workplace?

Less ignorance, better understanding – all people go through daily challenges that you are not aware of so always be kind, and being mindful of others.

Before COVID when we with rare diseases were wearing masks when we were not well, the comments were just horrible and hurtful – hopefully all have learnt the value of a mask during this pandemic. People should stop thinking that those of us with these rare disease risks are overreacting when someone around us is sick – we know that infection etc. can end up in death. During the pandemic I have been super-vigilant, staying isolated – even if this meant I haven’t been able to have a meal with my own parents that are 10 minutes away from us or having to meet my cousin’s baby through the window.

Who are some of your role models who have a disability?

I learn from anyone who has a disability – no matter who they are or their age. There are some amazing stories of perseverance and fighting spirit that can be found on www.rarediseases.org and those are the stories that keep me going.

Two who stand out to me, though, are:

Retha de Wet (on instagram as: goodlife_badmuscles) who has endured many stages of Myasthenia Gravis but always keeps on going – Retha completed her degree in speech therapy despite going through long periods of chemo/polygam.

Megan (on instagram as: meggi_flowercrowns) – who is the first Myasthenia Gravis patient in South Africa to receive a stem cell transplant to try and reset her immune system, which is unfortunately not a cure. She is a blogger, on social media and is working with Rare Diseases South Africa.

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The World Health Organization (WHO) estimates that 15% of the world's population has a disability and only 48% of working-age people living with a disability are employed. These stats show why it’s critical that companies become more inclusive and embrace diversity in all its forms. And this is why Vodacom has made it our mission to build an inclusive culture where everyone is respected, can be themselves and strives to be their best. 

Click here for more information about the benefits of working at Vodacom or here to read another interview with someone from Vodacom living with a disability.