Rare Community Profiles

Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

Christine Ha: Chef, Writer, Advocate, and NMOSD Patient

Christine Ha was around 20 years old when she started having blurred vision in one eye. Naturally, she decided to pay a visit to her optometrist. She was told that her issue was neurological in origin, so she visited a neuro-ophthalmologist next. There, the physician said that the most likely issue for someone of her age was multiple sclerosis, but an MRI (along with a litany of other tests) failed to detect the tell-tale signs of the condition.

She was treated with corticosteroids which brought temporary relief, but her vision didn’t improve. Over the years she was able to adapt, but as she was beginning her career, another symptom appeared: tingling and numbness in her leg. Christine was once again tested for MS. While the diagnosis wasn’t really confirmed by the tests, the doctors went ahead and began giving her MS therapies, which had no positive effect:

“In spite of the MS therapies I was on I continued to get a lot of flareups that affected my optic nerves and my spinal cord.”

These attacks saw her vision issues progress even further. It was only after several more years that she was correctly diagnosed with neuromyelitis optica spectrum disorder (NMOSD).

About Neuromyelitis Optica Spectrum Disorder (NMOSD)

Neuromyelitis optica spectrum disorder (NMOSD) is a term meant to include both neuromyelitis optica patients and those that lack the APQ4 auto antibody but still present similarly otherwise. There is a cell-based blood test that looks for AQP4 antibodies. If AQP4 antibodies are found through the test, it will confirm an NMOSD diagnosis. Anti-AQP4 antibodies are found in approximately 80% of NMOSD cases. This disorder is also known as Devic’s disease. It is characterized by inflammation of the optic nerve and spinal cord along with destruction of the myelin sheath, an insulating, protective layer surrounding nerve cells. It is considered an autoimmune disease in which the immune system mistakenly begins attacking parts of the body. It is frequently associated with other diseases, such as viral infection and antiMOG-associated encephalomyelitis, the latter of which can be a direct cause in some cases. Symptoms include blindness, urinary incontinence, spastic paralysis of the legs and arms, reduced sensation, and overall muscle weakness. Symptoms can be treated, but many patients are left with a degree of impairment. To learn more about neuromyelitis optica spectrum disorder, click here.

Since she was diagnosed correctly and put on the right medication, Christine has been free of symptom flareups. However, the delay in diagnosis meant that she had effectively lost her vision. That has not stopped Christine from succeeding as both a best-selling writer and professional chef. When her symptoms were greatly affecting her life on a day-to-day basis, she decided to pursue a master’s degree in creative writing.

“There was a point in time when I had both optic neuritis and spinal cord inflammation…it was so bad that I could see nothing, and I was paralyzed from the neck down. Only my brain was working and one of the only ways I could pass the time was listening to audiobooks. I rediscovered my love for literature.”

She first gained notoriety in 2012 for winning season three of MasterChef, a competitive cooking reality TV series. Christine was the first blind contestant on the program:

“It was in my last semester of the MFA program that I had the opportunity to audition. I taught myself how to cook starting in college.”

She had to adapt her cooking skills even further as her vision started ebbing away. Christine had no expectations of winning the contest, instead hoping that the experience would fuel her creative writing. The victory opened up an entirely new litany of opportunities in the culinary world. She has had success opening restaurants such as Xin Cháo and the Blind Goat. Her latest restaurant, Stuffed Belly, is forthcoming this spring.

Christine recognized that there were parallels between food and writing, as they can both be ways of connecting with others. A cookbook that she wrote after winning MasterChef put her on the NYT bestseller list.

More recently, Christine has also taken up the role of rare disease advocate as part of the NMOSD Won’t Stop Me initiative in partnership with Horizon Therapeutics, the Guthy-Jackson Charitable Foundation, Siegel Rare Neuroimmune Association, and The Sumaira Foundation.

“As I was losing my vision, I felt like it made me less of a person. I was quite ashamed of my vision loss. I tried to hide it a lot of the time. After being on television, that forced all of that to be suddenly put in the spotlight…in the end, it was quite liberating.”

After what she had endured, Christine knew that she had a responsibility, both as a patient and a public figure, to do her part to advocate on the behalf of other patients.

“I have lived through this, so I understand what it’s like to be like a patient with a rare disease. I will say that everyone’s story is unique…I think what we share is the human experience of struggle, and also, on the positive side, we find community and support through other people who understand us. It can be isolating and lonely, but there are a lot of resources out there.”