KENNEBUNKPORT – A random chest X-ray led to an appointment with a pulmonary physician several months later, then a second appointment for Goose Rocks Beach resident Sharon Eon. When that proved to be less than satisfactory, Eon said she contacted another physician, who diagnosed idiopathic pulmonary fibrosis.

Idiopathic pulmonary fibrosis is one of several pulmonary fibrosis diseases. In short, it scars the lungs, and the scarring causes stiffness, which makes it difficult to breathe.

Eon, diagnosed in 2019, wants everyone to know about the disease. She wants people to be diagnosed early, and she wants lawmakers on Capitol Hill to be aware of it too – so they can include and expand funding for research.

She was to head – virtually – to the nation’s s capital on Wednesday, March 10, to talk with Senators Susan Collins and Angus King and Congresswoman Chellie Pingree about pulmonary fibrosis, seeking support for a couple of programs to advance research.

The event is called “Hill Day,” and Eon will be among 70 people approaching lawmakers about the issue.

Idiopathic pulmonary fibrosis is the most common, but still relatively unknown. According to Eon, there are about 200,000 cases in the U.S.; 50,000 more are diagnosed annually, and 40,000 people die of it each year. Symptoms include shortness of breath, dry cough, fatigue, weight loss and more.

Eon said it is often misdiagnosed, but like so many diseases, the earlier one knows they have it, the better it can be managed.

“I thought, ‘I need to arm myself with as much information about this disease as I can,'” she said, recalling her thoughts when she learned there is no cure. “And I needed to find others who have it, because it is scary and isolating.”

There are no support groups in Maine at present, though Eon joined online groups in other states. She is also an ambassador with the Pulmonary Fibrosis Foundation.

“Being accepted as an ambassador has helped me learn more, become an advocate for my own health care and raise awareness of the disease,” said Eon. “I tell my doctor, dentist – I educate everyone I can so they can look for the signs, so it isn’t misdiagnosed.”

The foundation hopes for additional federal funds directed to pulmonary fibrosis research.  Specifically, Eon said ambassadors hope to discuss the congressional funding report for the National Heart, Lung, and Blood Institute on the importance of pulmonary fibrosis research, and maintaining pulmonary fibrosis in the Peer Reviewed Medical Research Program at the Department of Defense, both furthering the cause.

Retired from organizational development, Eon’s personal goal is to educate people about the disease.

Eon is taking one of two medications available, designed to slow the progression. Others she knows are on oxygen. A lung transplant is a last resort for many, she said.

So far, things are good. Eon is a is a walker, and said for the most part, is active as she always has been.

“I want to stay that way,” she said.

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