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Ron's Story

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ALPHA-1 ANTITRYPSIN DEFICIENCY

Ron first learned to ride a motorcycle when he was a kid. Zipping along the dirt roads of a small town in Delaware, he says being on the bike was a way to have fun and relax with friends. As an adult, it’s a way for him to be fully present in the moment. “When I ride, it’s just me and the wind,” says Ron. “It completely clears my head.” His self-described “motley crew” includes his wife and two children as well as seven rescued kittens, five ferrets, three mastiffs and one pug.

In 2009, Ron was severely injured while working as an ironworker at a construction site. He was placed in critical care with a collapsed lung, among other injuries.

After undergoing multiple surgeries, he recovered and returned home but something significant had changed. He couldn’t breathe “right”. “I was still having extreme difficulty breathing,” says Ron. “And no one could figure out exactly why.”

In search of a second opinion, Ron’s case manager researched his symptoms and decided to refer him to the Temple Lung Center. There, his new doctor assessed his medical history and ran several tests, including a blood test to check the level of a protein called alpha-1 antitrypsin. Insufficient amounts of this protein are usually caused by a genetic condition and make the lung especially susceptible to tissue damage, yet the screening test is often overlooked. Based on the results, Ron’s doctor was right: he was diagnosed with Alpha-1 Antitrypsin Deficiency (AATD). “At first, AATD made me feel like a prisoner because I could only go outside on certain days,” says Ron. “I had trouble breathing, especially in the summer and winter, or days with extreme weather.”

Ron’s new treatment plan included augmentation therapy - a weekly infusion of the alpha-1 antitrypsin protein, which he says led to a great improvement in his everyday symptoms. However, he still had trouble riding on the bike because the forced wind caused him discomfort. Wanting to help Ron get back to living life to its fullest, his doctor showed him a simple technique to slow down the pace of his breathing, making each breath more full and efficient. “Pursed lip breathing is my number one go-to,” says Ron. “When I ride, I’ll have moments where I can tell my one lung doesn’t want to work but I just tightly press my lips together, slowly exhale a few times and it gets better.” Paired with a knit ski mask his wife gave him, he says riding is much easier now. “I’m extremely grateful for all my care team has done for me,” adds Ron. “I’ll be thankful for the rest of my days.”

Ron says as soon as he can find a reliable pet sitter, he wants to plan a cross-country road trip for his family which he will, of course, complete on his bike.