Feb. 28 was Rare Disease Day. In the United States, a disease is defined as rare when it affects fewer than 200,000 Americans. Five years ago, I wouldn’t have imagined being personally affected by a rare disease. However, it was just five years ago that my husband was beginning to demonstrate the signs that something was wrong.
He experienced shortness of breath and a dry cough, despite being physically fit. It got worse rapidly and when diagnosed with pulmonary fibrosis in September of 2013, when we really understood what it means to have a rare disease. There is no cure, at that time, no medications to slow the progression, and the recommendation was to be evaluated for a lung transplant.
I became passionate about fighting for support, advocating for resources to fund research, fundraising to do something. While we are fortunate that he received a lung transplant last May, most do not. Please join me in support of Rare Disease Day, learn more at www.rarediseaseday.org.
Karen Lane
Waterville
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