Living with CVID: How Megan Reclaimed Her Freedom Through Advocacy

Megan Ryan
2023 Infusion Access Foundation Champion
A story about living with Common Variable Immune Deficiency

Megan Ryan was a recent graduate and newlywed just beginning her career when she was diagnosed with Common Variable Immune Deficiency (CVID). While the timing was hectic, Megan chose to follow her doctor’s advice and focus on the positive: a successful treatment was available. In an era before the “anxiety-provoking” rabbit holes of the modern internet, Megan relied on a simple printed pamphlet and her own resilience to navigate the early years of her chronic illness.

Over the past two decades, Megan has mastered the art of “bouncing back.” She has balanced a rigorous lifestyle of diet, exercise, and mental health practices with a strict compliance to her treatment plan. However, the most significant shift in her quality of life came with the advancement of medical technology. Megan transitioned from spending entire days tethered to an IV in a hospital infusion center to using a hand-sized portable pump. This device has allowed her to take her life-saving Immunoglobulin (Ig) treatments “on the go,” traveling to more than 20 countries and four continents.

Today, Megan is a veteran advocate for the Immune Deficiency Foundation, traveling the world to educate patients and healthcare providers. She has moved from facing her challenges in isolation to finding a “legion” of support through the plasma donor community and her fellow patients. For Megan, CVID hasn’t been a stop sign; it’s been a journey of hope, resilience, and global impact.

"When I first began Ig treatment, I would have to take time off work and go to a hospital’s infusion center to spend much of the day with an IV in my arm. Today, I get it through a portable infusion pump about the size of my hand. It lets me infuse Ig on the go. I infuse every week without fail. The entire process takes about 2.5 hours. My pump has seen more than 20 countries and four continents so far. The ability to do infusions wherever I happen to be has made it possible for me to travel the country to help educate patients and health care providers about primary immunodeficiency diseases.”