— From Diagnosis at 22 to Inspiring Others

A story of young courage, resilience, love, and the power of community

When Ilona Deyzel was diagnosed with Multiple Sclerosis at just 22 years old, she had no idea how deeply the journey would reshape her life. Today, at 34, Ilona lives in Gqeberha with her husband and a house full of adored dogs — her “furbabies” — and she uses her voice to remind others that a meaningful, joyful life with MS is absolutely possible.

A Childhood Shaped by Love — and an Early Brush With MS

Ilona grew up in Kariega in the Eastern Cape, where her parents worked as teachers and raised her and her sister in a close-knit, grounded home. MS first brushed her life when she was only six years old, watching her uncle navigate the disease. He passed away in 2008, leaving a lasting emotional imprint and a memory that would surface again years later.

Ilona went on to study Optometry at the University of the Free State, eventually settling in Gqeberha. She started her career at Specsavers Greenacres and, by 2015, became a partner at the practice — a milestone she remains incredibly proud of.

When she isn’t working or caring for her dogs, Ilona spends her time gardening, especially nurturing her beloved proteas.

The First Signs Something Was Wrong

In 2013, life took an unexpected turn. One day, the right side of her face went numb — and within hours, the numbness spread down her arm and leg. Surprised and frightened, she went straight to her GP.

“My GP immediately thought it was MS.”

It was a shocking suggestion, especially since Ilona had always heard that MS was not hereditary, yet she had seen her uncle deeply affected by it.

Within two weeks, Ilona secured an appointment with neurologist Dr Marcell Britz, who sent her for an MRI and lumbar puncture. She was diagnosed with MS — but because she had only experienced one episode, she wasn’t eligible to start treatment yet.

By February 2014, her feet went numb. A second MRI confirmed new activity, and she was finally able to begin treatment. Over the next few years, she tried different medications and continued navigating life with her characteristic determination.

Ilona got married, built her career, and began dreaming of starting a family.

A Second Diagnosis — and a Different Kind of Loss

During a routine check-up with her gynaecologist, Ilona received devastating news: Stage 1B1 cervical cancer. She underwent a trachelectomy in Pretoria — a fertility-preserving surgery — and thankfully, the cancer had not spread.

Clean and hopeful, she and her husband turned to IVF to try for a baby. But MS medications had to be adjusted to “safer” options, and the hormonal shifts triggered two severe relapses.

“The IVF didn’t work, and my neurologist advised me to think carefully before trying again. Maybe next time I wouldn’t be so lucky.”

Faced with the risk of permanent nerve damage, Ilona and her husband made a brave, heartfelt decision:

“We decided that’s it. Let’s stick to furbabies.”

It was a painful chapter — but one she reflects on today with acceptance, gratitude, and grace.

Discovering Community — and the Triumphs That Matter Most

Through her work as an optometrist, Ilona met another person with MS who encouraged her to connect with MSSA. That introduction changed her world. Suddenly she had a tribe — a group of MS warriors in Port Elizabeth and the surrounding areas who understood her experiences in a way no one else could.

“They are very special to me.”

Ilona says her greatest triumphs aren’t the big moments, but the small, everyday victories that many take for granted.

“The biggest triumph for me is every day when I wake up and walk. It’s the little things we must be grateful for.”

She knows all too well that many people living with MS wish only to take one step unassisted.

Her Words for Others Living With MS

Ilona’s message is grounded in empathy, realism, and courage:

• Find a support group.
  Family and friends care deeply, but they may not understand MS.
  “At MSSA you will definitely find someone who has experienced what you are experiencing.”

• Take each day as it comes.
  “One day you feel like you can climb Mount Everest, the next you don’t even want to get out of bed — and that’s okay.”

• Listen to your body. Don’t try to be brave when you need rest.

• Never compare your MS journey to someone else’s.
  “Some people can do a marathon, some people can’t. Focus on what makes you happy and surround yourself with people who add meaning to your life.”

A Life of Purpose, Love, and Quiet Strength

Ilona lives with clarity now — clarity about what truly matters, what deserves her energy, and how gratitude turns ordinary moments into triumphs. Her story is a testament to resilience, compassion, and the strength of choosing joy even in the midst of uncertainty.

She may have been diagnosed young, but she has carved a life filled with love, learning, purpose, and community. And in telling her story, she is helping others believe in their own possibilities too.