diagnosis

In my early 20s, I decided to drop everything and travel across Europe with my close friend Phil. Our trip was memorable for many reasons, including the fact that it was in Italy when I first felt unwell. It was a hot summer, and 14 years ago, most of Europe…

Nonprofits, scientists, governmental organizations, and the rare disease drug development industry have long cited 7,000 as the average number of rare diseases in the world. But a new analysis shows there are as many as 10,867 rare diseases globally. And that…

August 2017 was a busy and exciting time for our family. My youngest daughter, Bella, and I had just spent the weekend helping my oldest daughter move into her dorm room and begin her freshman year of college; my son had just begun his freshman year of high school; Bella…

Caring for our mental health and pursuing wellness require a lifetime commitment and hard work. It’s sometimes easier said than done, but taking a moment to yourself to reflect on the day, or on a feeling or emotion, can do wonders for your mental health, especially when living with chronic…

At one point in my life, I thought I wanted to be a flight attendant. As a first-generation Canadian, my parents, who immigrated here in 1968, told me stories of foreign countries and the people, the unique food, and the different languages. For most of my childhood, I grew up…

A chronic illness diagnosis can be stressful, overwhelming, and scary, especially when the illness is rare and has no cure. When my daughter Bella was diagnosed with neuromyelitis optica (NMO) in 2017 at age 9, we were instructed by her doctors to spend one hour online learning everything we could…

I have never met Sumaira Ahmed in person, but her energy and passion radiate through computer screens and phone calls. It’s what convinced many of us to follow her charge and become ambassadors for her nonprofit organization, The Sumaira Foundation for NMO, or TSF for short. As…

Some people are natural-born performers, leaders, artists, lawyers, doctors, or teachers. I like to say I was born to be a caregiver. Some of my first memories are watching over my younger sister and cousins while we were growing up. I like to think that caregiving is something that runs…

In my family, I am the third child of four, the daughter of proud, immigrant parents. I grew up in small towns until I finally relocated to Toronto in my early 20s. Growing up, I only knew one kid with an illness, and she entered my life as quickly as…

I will always love the feeling of a good bass line, the way the sound escapes concert speakers and vibrates through my entire body. It’s poetic justice that this feeling can now trigger painful spasms, a symptom of neuromyelitis optica spectrum disorder (NMOSD). My husband (then fiancé) and I had…