Celebrity chef Sean Brock shares a taste of life with a rare disease

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(BPT) - No art form engages all five senses the way cuisine can. We hear it being prepared, we smell it and see it as our anticipation builds, we feel it on the lips and in the mouth, and of course taste its delicious flavors. All five senses come together to complete an immersive sensory experience that only few creators can master.

Sean Brock is one such artist — a James Beard award-winning chef, founder of the renowned Husk restaurants in the Southeast, former partner and chef at McCrady’s Charleston, and owner of The Continental and Audrey in Nashville. He has written two New York Times best-selling cookbooks and been featured in television cooking programs like Chef’s Table and Mind of a Chef. His innovative, original dishes using authentic Southern ingredients with West African influence have garnered national praise.

Chef Brock knows how the sensory experience of food can affect the body and the mind. He also understands what can happen when the mind, the body and the senses are overloaded to the point that they stop functioning properly.

Feeling the burden

Prioritizing self-care is a practice that did not come easy for Sean — and was born out of necessity. His rapid rise to success was a result of intense drive and passion. He was a self-proclaimed workaholic and found a sense of pride in the burns on his hands and arms, a mark of glory for a chef.

Eventually, his fast-paced lifestyle was joined by mysterious symptoms. Sean began to experience double vision and other sight impairments, and exhaustion that intensified by the day. Visit after visit to doctors — different specialists, invasive procedures and surgeries, and multiple misdiagnoses — left him with no answers. Over time, he even experienced trouble controlling his hands. These symptoms made it nearly impossible to do his job. After two years of dashed hopes and frustration, he was diagnosed with myasthenia gravis (MG) in 2016. Sean recalls, “I remember thinking to myself, I wasn’t a chef anymore, I was a patient ... and that was terrifying.”

MG is a rare, chronic autoimmune disorder that can be difficult to diagnose due to the waxing and waning of symptoms and rarity of the disease.1-3 MG causes a person’s immune system to attack the junction where the nerve meets the muscle, often leading to debilitating and potentially life-threatening muscle weakness and fatigue.1-2,4 People with MG often have trouble performing daily tasks like speaking, chewing or swallowing food, moving one’s eyes and even breathing.1-2

Once he received a confirmed diagnosis, Sean learned that high levels of stress made his MG symptoms significantly worse. He could not keep working as he had before — on his feet in fast-paced, high-intensity kitchens for 16 hours a day. He had to make a major lifestyle change.

Hearing their stories

Sean’s experience with MG has opened his eyes to a new community: the widespread, and usually overlooked, community of people living with rare diseases. “I've gotten to know some pretty amazing people and I've actually helped others reach a diagnosis,” he says. He aims to continue connecting with people who have their own experience with the disease and raise awareness of the challenges they face.

Sensing the need

In light of these efforts, Sean has teamed up with argenx, a global immunology company, to create a cookbook centered around recipes specifically tailored to people living with MG. Cooking Together is available on MG.United.com, a resource site for the MG community.

Cooking Together aims to take some of the difficulty out of challenging tasks like cooking for MG patients. “We think of preparing food as a common experience — anyone can cook. But the reality is, for people with rare diseases, there are challenges that can make it seem out of reach,” says Sean.

Packed with mouthwatering dishes and flavors, he’s personally created three recipes with foods meant to be easy to chew and swallow — a major lifestyle obstacle that MG patients often face.1-2,5 Cooking Together also includes tips from a nutritionist, crafted for MG patients, to help manage an inflammatory condition, and recipes submitted by people throughout the MG community — practical, insightful, and delicious ideas from people who have found their own techniques for coping with their disease.

Feeding a passion

Having faced the prospect of losing the career and art form that he loves, Sean is more driven than ever to use the uniting power of a shared love of food to open hearts and minds to the realities that people living with MG face.

To learn more about Sean’s MG experience and to download the cookbook, please visit www.MG-United.com.

References:

  1. Myasthenia Gravis. National Organization for Rare Disorders. 2017. https://rarediseases.org/rare-diseases/myasthenia-gravis/. Accessed April 30, 2021.
  2. Myasthenia Gravis Fact Sheet. National Institute of Neurological Disorders and Stroke. March 202. NIH Publication No. 20-768.
  3. Gilhus et al. Myasthenia Gravis. Nature Reviews Disease Primers. 2019. ID: (2019) 5:30
  4. Gilhus N. Myasthenia Gravis. N Engl J Med. 2016. 375:2570-81. DOI: 10.1056/NEJMra1602678
  5. Howard, J. Clinical Overview of MG. Myasthenia Gravis Foundation of America. 2015. https://myasthenia.org/For-Professionals/Clinical-Overview-of-MG. Accessed April 30, 2021.