Ilona Deyzel Shares Her MS Journey, From Diagnosis at 22 to Inspiring Others

Photo Credit: Supplied

Ilona Deyzel may have been diagnosed with Multiple Sclerosis at a young age, but she has set her sights on a bright life filled with love, and she is making sure others know they can have that too!

Gqeberha, South Africa (06 July 2025) – In honour of the 75th anniversary of Multiple Sclerosis South Africa, we meet Ilona Deyzel, who is sharing her story in an effort to raise awareness and boost the public profile of the disease locally.

The incredible organisation is celebrating 75 years of raising awareness and support for South Africans with Multiple Sclerosis (MS). To honour those South Africans, we are delighted to highlight their inspiring stories as they face the unknown battles with their bodies to live life to the fullest.

The disease is still underrepresented in South Africa, but that is about to change! Multiple Sclerosis South Africa (MSSA) is raising the profile of the disease, offering support for families and raising funds to help make a difference. Their goal is to unite Africa and create a federation for the continent that will empower thousands of sufferers.

We hope to highlight many stories for their 75th anniversary: a diamond jubilee, so to speak. It is a celebration of all the gems who aim to make living with MS a little easier.

What is Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system. It interrupts the flow of information within the brain and between the brain and body. Symptoms can range from numbness and tingling to blindness and paralysis.

Every case is proving unique, and the progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving closer to a world free of MS.

Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide. MS is one of the most common diseases of the central nervous system. Today, over 2,500,000 people around the world have MS.

There is so much more to the disease, which we have shared for World MS Day 2023 here.

Ilona Set Her Sights on Raising MS Awareness

Ilona Deyzel was diagnosed with Multiple Sclerosis at the age of 22. Today, she is 34 and lives with her husband in Gqeberha and is surrounded by love with all her dogs.

Growing up in Kariega, Eastern Cape, Ilona and her sister were raised by their parents, who were teachers in the community. When she left school, she studied Optometry at the University of Free State. She then settled in Gqeberha, getting her first job at the Specsavers Greenacres. In 2015, Ilona became a partner at the practice and has seen great success in her career.

When not working or spending time with her dogs, Ilona enjoys gardening and, more specifically, is passionate about proteas.

Her first encounter with MS was growing up with her uncle, who was diagnosed when Ilona was just 6 years old. Sadly, he passed away in 2008.

Aside from general sinus and allergies, Ilona was never sickly growing up, so when the right side of her face went numb in 2013, she immediately went to the doctor. The numbness had spread from her face down to her right arm and leg. Her GP immediately thought it was MS.

“That was a big shock because growing up, I’ve been told MS is not genetic, and my uncle was severely affected. I got an appointment within 2 weeks with a neurologist, Dr Marcell Britz, who sent me for an MRI and lumbar puncture, and I was diagnosed with MS, but we couldn’t start with medication yet because I only had these symptoms once.”

By February 2014, her feet went numb, and she was sent for another MRI. She was finally able to start medication and found relief. The next few years, Ilona changed meds and life carried on. She married the love of her life, and they started planning for a family.

With her MS, Ilona visited the Gynae for a check-up, and it was here that another heartbreaking reality struck.

“I went to the gynaecologist for a check-up and got diagnosed with Stage 1B1 cervical cancer. I then got a trachelectomy (where they only remove the cervix) in Pretoria. Luckily nothing spread and been clean ever since.

We then tried to go the IVF route, and unfortunately, I had to change to a “safer” MS medication. The new medication and the hormones of the IVF didn’t work that well together, and I had 2 big MS relapses while I was busy with the IVF. The IVF didn’t work and my neurologist advised me to think carefully before I try again. Maybe next time I won’t be so lucky and it can leave permanent damage to the nerves. We then decided that’s it. Let’s stick to furbabies.”

Her struggles have been numerous, but Ilona has had an incredible support system, including her husband and family, as well as her business partners and staff. We asked Ilona what some of her triumphs have been through her MS journey.

“Triumphs were testing an MS warrior’s eyes at work. She introduced me to Non Smit and MSSA. Through them, I met wonderful people in Port Elizabeth, South Africa and even overseas. But big shoutout to my group of wonderful MS warriors in PE and the surrounding areas. They are very special to me.

But the biggest triumph for me is every day when I am able to wake up and walk. It’s the little things we must be grateful for that we take for granted. There are so many people, and especially people living with MS, who wish to just take 1 step on their own.”

As for encouraging others living with MS, Ilona has some thoughts.

“Get yourself a support group. Your family and friends are a good place to start, but they don’t always understand. At MSSA, you will definitely find someone who has experienced what you are experiencing at this moment. Even if we cannot give advice, at least we know the feeling. We are in this together.

Take every day as it comes. One day you feel like you can climb Mount Everest, the next day you don’t even want to climb out of your bed, and that’s okay. Listen to your body, don’t try to be brave.”

“Everyone’s MS journey is unique; some people can go do a marathon, some people can’t. Don’t compare yourself to other people. Just focus on what makes you happy and surround yourself with people who add meaning to your life.”