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
Copy the Story LinkSend questions/comments to the editors.
Success. Please wait for the page to reload. If the page does not reload within 5 seconds, please refresh the page.
Enter your email and password to access comments.
Hi, to comment on stories you must . This profile is in addition to your subscription and website login.
Already have a commenting profile? .
Invalid username/password.
Please check your email to confirm and complete your registration.
Only subscribers are eligible to post comments. Please subscribe or login first for digital access. Here’s why.
Use the form below to reset your password. When you've submitted your account email, we will send an email with a reset code.