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John Bach, MD, of the UMDNJ New Jersey Medical School, is a leading authority on breathing issues that can arise in individuals with facioscapulohumeral muscular dystrophy and other neuromuscular conditions. In this FSH Society webinar held on June 19, 2018, Dr. Bach provides an overview on best practices to ensure good management of breathing issues. He advocates that invasive ventilatory support can be avoided through proper use of noninvasive approaches.
Are there other doctors with the kind of expertise of Dr. Bach? If so, how does one go about finding them?
My boyfriend lives in Mississippi and is unable to fly. It would be helpful if he could find a doctor such as Dr. Bach closer to his home.
Dr. Bach has a website that includes a list of physicians who are trained in noninvasive ventilation for neuromuscular patients. Unfortunately, it’s not a very large list, but you might be able to find a specialist closer to you. https://www.breathenvs.com/
Or you might find a doctor who can refer you to someone in your area. You can also contact pulmonologists in your area and question them closely about their experience, expertise, and willingness to learn about managing FSHD. I think you can tell by interviewing a doctor to see if he or she is open-minded, listens well, and is willing to put in some effort to learn.