Finding New Trails Through the Gift of Plasma

By: Joseph Masnack

August 19, 2026

I was 50 years old when I learned I had Alpha-1 Antitrypsin Deficiency (Alpha-1 or AATD), but my journey started long before that.

I had always been active. Mountain biking, surfing, wakeboarding, and spending time outdoors were a huge part of my life. Yet no matter how fit I was, I always seemed to struggle more than everyone else.

Everything changed after an injury while working in home health care where I split my abdominal muscle. During my recovery, I scheduled an appointment with a specialist in Arizona and decided since I was already making the trip, I would drive down the coast and stop at a few golf courses along the way.

The trip didn’t go as planned.

I became severely ill, coughing up fluids like I’d never seen before and having difficulty breathing, and was hospitalized. Once I was stabilized, I made my way back home, but my breathing continued to worsen. By the time I saw my doctor, I could barely walk a few steps without having to stop to catch my breath. He immediately sent me to the hospital, where I spent another 10 days recovering.

After I was discharged, my pulmonologist ran a series of tests and handed me a simple at-home Alpha-1 testing kit. He explained Alpha-1 is rare and unlikely to be the cause but suggested I take the genetic test anyway. After sitting on my kitchen counter for a week, I finally took the test and mailed it in. A few weeks later, I received the call: I tested positive for Alpha-1.

Hearing the diagnosis was overwhelming, but it also brought relief. For years, I blamed myself for the condition of my lungs. Because the disease is so rare and often overlooked, many go undiagnosed until significant damage to the lungs and liver has already occurred. Today, there is no cure for Alpha-1, but plasma-derived augmentation therapy, a plasma-derived medicine, has helped slow the progression of my condition and preserve the lung function I have left.

Before my diagnosis, I never really thought about plasma donation, and I certainly never imagined I would come to depend on plasma-derived medicine to stay healthy. Today, it's something I think about every week when I receive my infusion and remember that my treatment exists because many generous donors chose to donate. In fact, it takes approximately 900 plasma donations each year to provide enough augmentation therapy for one Alpha-1 patient alone.

These donations give me, and so many other individuals living with rare disease, the ability to remain active, spend meaningful time with family and friends, and continue finding connection, purpose, and joy in our lives. While I can no longer participate in some of the physically demanding activities I once loved, I have discovered new passions, including music, and have found ways to adapt the activities that still matter most to me, like riding my e-bike, allowing me to return to mountain trails I once thought were behind me forever.

My diagnosis also gave me a new purpose. Over the years, I have become deeply involved in the Alpha-1 community through the Alpha-1 Foundation, advocating for and educating others living with Alpha-1, health care providers, lawmakers, and the public about the importance of testing, early diagnosis, plasma donation, and access to treatment. My goal is simple: help the next generation of Alpha-1 patients get diagnosed sooner and receive the care and treatments they need, when they need them.