You Can Help Runner With Rare Disease Breathe Normally Again

28-year-old Emily Rogers was training for a half marathon in Hamilton a few years ago, when she started having trouble breathing. She never could have predicted what would follow.

The initial diagnosis was asthma but when the symptoms grew worse, they knew it was something deeper. After a multitude of tests, she was referred to an ear nose and throat doctor who thought the symptoms rang a bell. He had remembered hearing his professor talking about this particularly rare condition when he was in college. That professor went on to become a doctor as Toronto General. Emily sought him out for counsel.

It was that doctor who finally gave her the diagnosis: Subglottic Stenosis. This rare disease causes tissues to develop within tracheal airways which makes them dangerously close in on themselves. With it, even the smallest of tasks like walking down stairs or carrying a conversation results in shortness of breath. Its origins are still pretty unknown and it affects females more than men. To learn more about it, click here.

Emily was 26 when she was diagnosed and has had a rough couple of years, with a total of eight balloon dilation surgeries which helps open up her airways. The surgery, however, is putting a band aid on the situation with no permanent fix. Emily notices a positive change, but after a few months it starts happening again. It’s an endless cycle.

Emily gave birth to her now two-year-old son Bentley during the time span of those rigorous surgeries.

After extensive research, Emily and her family stumbled upon a Dr. Robert Lorenz in the United State who was an expert in subglottic stenosis. He was one of two doctors in the entire world who specialized in procedures called the Maddern and the REACHER, which have worked for all 20 patients who have done it.

Emily and her husband Mike have launched a GoFundMe page to try and raise money for the procedure that costs up to $100,000. So far they have raised nearly $40,000.

“Our hope is to be there by the spring time. I just don’t want to have to think about breathing anymore,” Rogers said in an interview with Caledon Enterprises. “It’s something that everyone takes for granted, but I have to think about it every single day. I want to be able to go for a run, or play with my son, and just … breathe.”

You can help Emily and her family by clicking here.

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