RARE Daily

Blind Chef Uses Visibility to Advocate for Rare Disease

March 26, 2023

Christine Ha taught herself to cook while in college. As a finance student at the University of Texas at Austin, it didn’t take a lot for her to figure out she couldn’t continue to afford to eat out. But part of her interest in cooking was to recreate dishes she remembered her mother, a Vietnamese refugee, making from her native cuisine. Her mother died when Ha was 14 before she ever had a chance to teach her how to cook.

“After a while I realized that I loved to cook for other people. There was something very meaningful to be able to cook something and share food with other people and make other people happy through something I made,” said Ha. “I got hooked, and then I started just reading voraciously about cooking, experimenting with different things, different ingredients and techniques, and learning as much as I could just as a hobby, as a side thing.”

Today, at 43, Ha is a successful restauranteur whose career took off after becoming the season 3 winner of the competitive cooking reality television series MasterChef featuring Gordon Ramsay. She and her husband own the Blind Goat, a Vietnamese gastropub infused with a bit of Texas flair in Spring Branch, Texas, about 35 miles north of San Antonio. They also own Xin Chào, which serves contemporary Vietnamese cuisine in Houston. Her appearance on MasterChef, though, not only provided her a platform for launching her career as a restauranteur, but also one as a rare disease advocate. She was the first blind contestant to win the competition.

While in college, Ha developed blurry vision that grew progressively worse. That would set off a diagnostic odyssey that would extend for several years and lead to her being incorrectly diagnosed at first  as having multiple sclerosis. Though she was prescribed treatments for MS, they provided no benefit. It would take four years for her to receive a correct diagnosis of neuromyelitis optica spectrum disorder (NMOSD), a rare inflammatory disease that often affects the optic nerves and spinal cord.

NMOSD primarily damages the optic nerves and spinal cord, causing blindness, muscle weakness, and paralysis. People with NMOSD experience unpredictable, severe relapses directly causing cumulative and permanent neurological damage and disability.

Ha lost vision in both of her eyes, suffered spinal cord inflammation, and during one flare up from the disease became paralyzed for a time. Having taught herself to cook once, she now had to teach herself again, only this time without the benefit of sight. The hazards of cooking blind do not just run the risk of mistaking salt for sugar, but working fast in a perilous environment around open flames and wielding sharp knives.

“I had to reteach myself to be independent and think about how do I use a knife? How do I use the stove or deal with fire with less and less vision?” said Ha. “It was like I learned to cook, got really good at it, and then I had to take some steps back and reteach myself how to do the same things with less and less vision.”

Ha has learned to adapt. Though her kitchen doesn’t look that different than other kitchens, she uses some tactile markers and keeps it well organized. She’s also learned to move around with her sense of touch and relies on good memory of where she puts things out.

Ha thinks her loss of vision has also sharpened her other senses and made her flavors more nuanced. She also believes it may have given her an edge in the MasterChef competition because she wasn’t distracted by what her competitors were doing and instead remained highly focused on creating her own dishes.

“I eventually learned that I could turn my vision impairment into a strength rather than a weakness,” she said. “Some of the contestants would look over and see their neighbor making something using very high-end ingredients or using very fancy techniques. And then it would mess up their game and their thinking and their plan. ‘That dish looks good and I’m going to change halfway through the challenge and do a different dish. Then they run out of time and they’re flustered.”

For Ha, who has long been highly independent, one of the hardest things about losing her vision is having to rely on others. She liked to do things herself, but in running a restaurant, she has learned to that’s it okay to let other people help her and she has learned to ask for assistance when she needs it.

The visibility she gained on MasterChef allowed her to tell her story and help educate people about NMOSD. Today, she is working with the rare disease drug developer Horizon, which makes the NMOSD treatment Uplinza. That, she thinks, has been an unexpected benefit of her victory on the television show.

“I’ve been able to now be a beacon of hope or a story of inspiration and encouragement for so many other people out there. I’m able to show them that, in spite of all of these challenges, I’m still able to live a purposeful life,” she said. “For me, I think the bigger reward is being able to help people live their lives better and find the right healthcare team for them and learn that they can steer their own healthcare and treatment plans if they’re educated and advocate for their own health and wellbeing.”

Today Ha is a published author. Following her victory on MasterChef, she wrote the cookbook Recipes from My Home Kitchen: Asian and American Comfort Food. MaterChef’s Ramsey wrote the forward. Her memoir that she started as her master’s thesis is yet to be published and she continues to work on it when she finds time. Right now, though, she is working on opening her third restaurant.

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