Living and leading with lung disease

Patient Advocate – Betsy Glaeser

Blazing the trail for NTM

Local to New York, Betsy Glaeser was diagnosed with pulmonary nontuberculous mycobacteria disease (NTM) more than 20 years ago.

Leading up to her diagnosis, Betsy was frequently short of breath with overwhelming fatigue and fevers. She was hospitalized multiple times for pneumonia and treated again and again with short-term standard antibiotics. At the time (1998), there were no clinical programs dedicated to NTM, and when her sputum was tested, it was only for pneumonia.

As a financial consultant required to travel 4 days per week for work, Betsy grew especially concerned about her illness when she developed hemoptysis and began coughing up blood. Lacking local resources, she sought care at the Mayo Clinic in Rochester, Minnesota, where she received her NTM diagnosis.

Based on the severity of her illness and her worsening symptoms, the recommendation of the Mayo Clinic was that she stop working. After 30 years of challenging jobs, quitting was very painful, but a Mayo doctor asked Betsy a very poignant question that resonated with her: “Are you planning to die for your employer?”

With that, she left her job and sought care for her illness. As her NTM developed a second, more resistant strain associated with her disease, requiring daily, constant treatment, Betsy was fortunate to be accepted into the National Institutes of Health NTM protocol, which has directed her care, coordinated with NYU-Langone.

Despite the challenges of having NTM, Betsy maintains an active and enriching life.
 

Leading with experience

Betsy uses her diagnosis and her experience with NTM to help others who are hearing their diagnoses for the first time. She serves as a charter member and co-leader of a New York NTM patient support group and serves as a member of the NTM Info & Research (NTMir) Board of Directors.

Her goal is to ensure that no one living with NTM feels alone or frightened.

“Not so long ago – and now, too, even – there were doctors who did not know how to treat NTM,” says Betsy. “But, it has really gotten better – as I’ve progressed through all of my medications and lived with this disease, NTM has progressed as well. I hope I helped expand NTM knowledge with my lived experiences, but I’ve been so fortunate to receive medical care from those doctors who knew the most about NTM.”