When she was 20 years old, Christine Huyen Tran Há started losing her eyesight. Doctors ran many tests and mistakenly concluded she had multiple sclerosis (MS).
Nearly 4 years passed before she was correctly diagnosed with neuromyelitis optica spectrum disorder (NMOSD)—a rare disease believed to affect about 400,000 people worldwide, the vast majority of them women. After that diagnosis, she continued to experience optic nerve inflammation, and by age 28, Há was completely blind.
Yet that didn’t prevent her from winning the top cash prize of $250,000 in season 3 of the TV reality show MasterChef in 2012, writing a New York Times bestselling cookbook the very next year, and eventually opening 2 Vietnamese-themed restaurants—The Blind Goat and Xin Chào—in the Houston, Texas, area.
“These challenges have taught me to be more compassionate towards people who are dealing with diagnoses and chronic illnesses,” Há, 42, told Rare Disease Advisor by phone from Houston, where she was raised by her Vietnamese-born parents.
March is Neuromyelitis Optica (NMO) Awareness Month, and to mark the occasion, Há and Horizon Therapeutics have teamed up with the Guthy-Jackson Charitable Foundation, the Siegel Rare Neuroimmune Association, and the Sumaira Foundation on an initiative called “NMOSD Won’t Stop Me.” The campaign encourages people living with NMOSD and their caregivers to share stories and advocate for themselves.
“For my personal journey with NMOSD, every time the doctors tried to diagnose me fully with MS and they did MRIs of my brain, it would not show up. They ended up diagnosing me with MS by default because I’d had multiple attacks that affected both the spinal cord and the optic nerve,” she said.
“MS is the more common disease that tends to afflict people in that stage of life. I found out later that there was a biomarker test that came out that you could test your blood, and then find out if you’re NMO‑positive or negative,” Há explained. “My neurologist at that time sent off my blood to the clinic, and then I got back an NMO‑positive diagnosis. That’s when they confirmed that I had NMOSD.”
Early, Definitive Diagnosis of NMOSD Is Crucial
Horizon is involved in the initiative because of its NMOSD therapy inebilizumab-cdon (Uplizna®). Inebilizumab is the first and only anti-CD19 B-cell depleting humanized monoclonal antibody approved by the US Food and Drug Administration to treat adults with anti-aquaporin-4 (AQP4) antibody-positive NMOSD.
NMOSD symptoms can appear similar to those of MS, but NMOSD relapses are often more severe and can lead to an accumulation of irreversible damage and disability, according to a Horizon fact sheet on the disease. For both reasons, getting an early, definitive diagnosis is crucial, experts say.
“There can often be a long road to an accurate NMOSD diagnosis, and Christine has underscored the importance of education and self-advocacy,” said Kristina Patterson, MD, PhD, medical director for neuroimmunology at Horizon. “We hope this initiative allows people living with NMOSD to learn from one another, and ultimately helps more people find answers.”
Everyone who submits a story to the campaign will receive Há’s 224-page cookbook, Recipes from My Home Kitchen: Asian and American Comfort Food, as well as the chance to connect with Há and others living with NMOSD during a Facebook Live event and virtual cooking class. Individuals who submit stories could also be selected for the chance to meet Há.
Interest in Cooking Coincided With NMOSD Diagnosis
The culinary star said her interest in cooking, born out of necessity, coincided with her diagnosis of NMOSD.
“When I was in college, when I experienced my first optic nerve inflammation, that was also the time when I started teaching myself how to cook,” she said. “I had moved out of the dormitory, so I didn’t have the cafeteria to rely upon. Growing up, I ate a lot of Vietnamese food because my parents had immigrated from Vietnam. I lost my mom when I was young, and she never taught me how to cook, nor did she write any recipes to leave behind.”
Há added: “I found myself missing her cooking and decided to teach myself how to cook by remembering aromas and how things tasted from my childhood. It was a hobby, but I continued at it because I enjoyed it.”
How is it possible to make award-winning recipes when she can’t see what she’s doing?
“It takes a lot of figuring out and using your other senses and being able to adapt,” she explained. “I started off very simple. Everything was done by touch or using my other senses, like listening to how something sounded on a pan, I would know if the pan was hot enough, and, of course, using my sense of smell and taste as well. It was learning to be more in tune with my remaining four senses in order to navigate the kitchen.”
As for her favorite dish, Há has several.
“One of the things I love making is this braised pork belly dish that my mom cooked quite often while I was growing up. It’s a very humble dish, uses very inexpensive ingredients. It was something, as a working mom, she would make a big batch of it, and we’d freeze it, and then chip at it away throughout the week,” Há said. “She also made very good beef noodle soup. I, to this day, I have yet to feel like I’ve been able to do her justice with recreating that dish. I’ve spent many years trying to recook that dish and making it taste like hers.”
Há more recently became a judge on the third season of MasterChef Vietnam. She’s also the first chef to win the prestigious Helen Keller Personal Achievement Award (2014), and has made the James Beard Foundation’s 2022 Restaurant and Chef Semifinalists list; winners will be announced June 13, 2022.
“NMOSD is a part of me, but it’s not all of me. I’m also a chef, a writer, an entrepreneur, a Vietnamese-American and many other things,” Há said. “I’m excited to be part of this initiative and to hear how others living with NMOSD define themselves, outside of the condition. For anyone who is part of a rare disease community, it’s a shared diagnosis that brings us together, but I think it’s through our individual triumphs and journeys that we can really learn from one another.”