Most people have never heard of neuromyelitis optica spectrum disorder (NMOSD) until they're faced with the diagnosis. Like many rare diseases, it's difficult to pronounce and can be just as difficult to identify.
An estimated 22,000 people live with NMOSD in the United States. Symptoms can look a lot like multiple sclerosis (MS), which has led to 41% of people initially being misdiagnosed. However, NMOSD attacks often appear with more force than MS and can lead to permanent disability, such as blindness or paralysis.
Christine Ha, winner of the third season of MasterChef and an entrepreneur with two restaurants in Houston, lost her vision due to NMOSD over 20 years. She describes how she felt scared, lonely and isolated during those early days.
While getting diagnosed with a rare disease like NMOSD still solicits these feelings Ha experienced, things look different for people living with the disease today. There is a strong and connected advocacy community, ways for patients to build connections and new approved treatment options to reduce the risk of attacks. March is NMO Awareness Month and an important time for this community to come together and celebrate what it means to not be defined by a rare disease diagnosis. Hear how Ha reignited her passion for cooking and found success after losing her sight to NMOSD.
In Ha's Own Words – How NMOSD Did Not Stop Her
Cooking started as a need for me when I was in college and realized I couldn't afford to always eat out. My mom was an excellent cook who was always making traditional Vietnamese meals when I was growing up. She died when I was 14 and unfortunately, I didn't have the chance to learn from her and always missed the dishes I grew up eating.
It was around this same time, at age 20, that I started noticing blurriness in my right eye. At first I thought there was just something wrong with my contact lens, but I eventually went to see an optometrist who determined the issue was neurological. I was initially misdiagnosed and put on an MS treatment. During this time, I had my first bout of spinal inflammation and couldn't move from the neck down. It felt like I was stuck in a child's body, and I was also losing my ability to see. It was terrifying.
I was finally correctly diagnosed with NMOSD four years later, a rare and debilitating autoimmune disease caused by inflammation in the central nervous system. By my late 20s, I had almost completely lost my vision. To this day, I describe what I can still see as like being stuck inside a cloud.
What I hadn't lost was my urge to cook – to connect with and satisfy others.
It was a slow process, and I was nervous about using a knife again and working over an open flame. But I'm a very determined person by nature, and I wasn't afraid to mess up or fail.
It was during this time of relearning and advancing that I heard about auditions for the cooking competition show "MasterChef."
My friends and family encouraged me to audition and said America really needed to hear my story. I knew I was pushing myself out of my comfort zone, but I never doubted I could do anything I put my mind to.
By the time I went on the show, I had learned to rely on my other senses – touch, sound and taste. I surprised myself and the country when I began to wow the judges, and it also gave me the opportunity to speak so openly and publicly about my vision loss.
In the final competition, I made a Thai vegetable salad, a braised pork belly steamed in coconut soda and a coconut-lime sorbet, using the bold flavors and simple ingredients my mother once used. When I won the show, the response was overwhelming. Not only did it prove that I can accomplish anything I put my mind toward – I knew I'd reached and inspired others who were also living with this disease.
There is a special power in community when you live with a rare disease like NMOSD. Through my partnership with Amgen on the NMOSD Won't Stop Me initiative, I've met people like Ireland, who is now 21 years old but was diagnosed with NMOSD at age eight. She told me that watching my season of MasterChef showed her there's still the possibility of dreams and achieving them despite living with this condition.
Christine Ha welcomed others who live with NMOSD to one of her restaurants in Houston where they all discussed their unique journeys.
March is NMO Awareness Month, and I encourage everyone who lives with this or any other rare disease to advocate for yourself and seek inspiration from others. We all have the strength within us to move forward when faced with challenges, but we don't have to do it alone.
