We all know that an early diagnosis can save lives.
But, in an unexpected turn, this mother’s late diagnosis is what saved her son.
RareConnect.org details the story of Malinda Zervakos, one of only 30 people in Canada diagnosed with Muckle-Wells syndrome.
She just had to nearly die to get that diagnosis.
Zervakos spent a lifetime with odd symptoms, including joint pain, hearing issues, and chronic hives. These issues created a wall between her and her classmates, but threats of bullying—though extremely hurtful—couldn’t quite compare to the fatal threat of a mystery illness.
Without a diagnosis or treatment, Zervakos suffered long hospital stays throughout childhood and adolescence as doctors scrambled from one insulting, painful misdiagnosis to another. They doubted she would live until high school, yet alone escape death long enough to get married, have two children, and start work as an ICU nurse.
But that’s exactly what she did…until death caught up.
In 2009, Zervakos began her battle with intense diarrhea and malnutrition. By fall of 2011, a weakened Zervakos desperately sought out the opinion of a skilled team of doctors to finally get an answer.
To everyone’s shock, they delivered!
Through a coordinated effort, specialists diagnosed Zervakos with the rare genetic disorder, Muckle-Wells syndrome (MWS) with amyloidosis. Soon after, Zervakos—feeble, dying, and weighing a measly 89lbs—was admitted to Royal Victoria Hospital and started on Total Parenteral Nutrition.
She believes the treatment and diagnosis—though late in coming—saved her life.
And most importantly to the mother, it saved the life of Liam, her six-year-old son.
While her lifetime of struggle led to peril and hardship for Zervakos, her son fairs better. He was tested and diagnosed with MWS soon after his mother’s dramatic diagnosis, but unlike his mother, Liam will benefit from an early diagnosis and increased disease understanding.
“Everything that happened to me allowed my son to be diagnosed early,” Zervakos explains. “He’s going to have a great life.”
