Seven Years to a Diagnosis, a Lifetime of Advocacy

My name is Ilze, and I was born with a rare heart condition. My parents lost my older sister at just 3 days old to the same disease. Two years later, I arrived with the same condition—but thanks to improved medical technology, I am here today at 51.

Ilze

In the early 2010s, I started struggling to lift my arms and even swallow. I saw so many doctors and went through countless tests that I eventually gave up on finding a diagnosis.

One day I visited my GP for what I thought was a simple eye infection. He referred me to a new ophthalmologist—and the moment I walked into his office, he looked at me and said:

“I think you have Myasthenia Gravis.”

I had never heard of it. My first thought was, “That sounds like a plant!”

It took more than seven years to finally be diagnosed with Myasthenia Gravis, and another 18 months to receive a diagnosis of Rheumatoid Arthritis.

During the following year, I was also diagnosed with ADHD and anxiety.I always say I’m a lucky packet of conditions!

When I first heard the words Myasthenia Gravis, I was terrified. I didn’t know anything about the disease. I turned to the internet for answers and found Rare Diseases South Africa. They connected me with fellow MG’ers—and it changed my life.

Their support helped me through days where my symptoms were frightening and difficult to explain. That sense of community remains invaluable.

Being diagnosed—and seeing how many people struggle with delayed diagnosis, lack of inclusion, and ableism—lit a fire in me.I wanted to make the path easier for others, especially in the workplace. 

I’ve worked for a large corporate for 18 years. When I was diagnosed, I disclosed my conditions early so that the reasonable accommodation process could begin. I also reached out to a senior employee who was an incredible advocate and mentor.

Their guidance helped me understand the process, and their support carried me on days when I was struggling.

Today, I work full‑time with regular reasonable‑accommodation reviews to ensure I have the support I need.

About two years ago, I had the privilege of becoming the lead for our Employees With Disabilities Network.

This opened doors to start education on rare disease and hidden disabilities since we didn’t have any information around this.  I focus on simplify processes and documents – ensuring that we include rare diseases and hidden disabilities and create a safer environment for employees with disabilities—and for caregivers too.

My passion is education, because what we learn at work doesn’t stay there. It influences our families, communities, and customers.

Ilze and her friend

As part of this education, I regularly invite experts—like the Rare Disease SA team—to join our conversations and webinars.  We extend invites to this to our entire company – who has a footprint in Africa and Europe. This ensure that these sessions have an impact and not limited to South Africa.

Our network is proudly sponsored by senior leadership – one of our sponsors put her hand up to be the sponsor for hidden disabilities. Disability is no longer a tick‑box activity; we’re building a holistic, supportive ecosystem.

Over the past year, our company has launched several initiatives to strengthen inclusion and psychological safety. We are nurturing allyship through a dedicated Disability Allyship Programme, and I’m excited to see how the landscape continues to evolve.

I use every opportunity to educate. Two things I always say are:

✨ “There are no dumb questions as long as they’re asked with respect.”

✨ “Lived experiences matter—never assume you know how someone feels. Everyone’s journey is different.”

When you’re 1 in 15, your story can change someone’s life.

So, I encourage you: share your journey whenever you can.

It may help someone get the diagnosis—or the support—they deserve.