One of Meghean Feidelman’s first memories is a chest x-ray at three-years-old. This was the beginning of a 40-year arduous journey before the unusual cause of her symptoms would be discovered. Along the way, doctors treated her for a variety of symptoms, but none identified the underlying cause. Everything changed when she finally saw a new doctor who had just finished medical school. The doctor actually Googled her symptoms and strongly suspected that Meghean had a relatively unknown primary immunodeficiency disease (PI) called Common Variable Immune Deficiency (CVID).
Pictured: Meghean Feidelman
Meghean’s story has a familiar ring among the PI community. Doctors often try ruling out other more common problems first, and many are unfamiliar with primary immunodeficiency disease. These are some of the reasons it can take so long to receive a diagnosis. In fact, according to a recent IDF survey, a PI diagnosis can take between nine and 15 years from the onset of symptoms.
“Over the years, I was told I had so many different conditions. Each one led to months or years of traveling down a path with no long-term relief,” explains Meghean. Once she received a proper diagnosis, her health began to improve. “I definitely have a better quality of life now that my condition is properly managed,” she says. Meghean’s experience motivates her to volunteer for IDF. “I volunteer with IDF to help others receive an earlier diagnosis and to preclude them from going through what I did for four decades. It’s easy to lose hope along the long journey.”
As an IDF volunteer, Meghean has worn many hats. She began as a Plasma Awareness Coordinator, sharing her story with staff and donors at plasma donation centers to help put a face on the impact of plasma donation. But more recently, Meghean has become an IDF Liaison, part of IDF’s movement to educate healthcare professionals about PI. “It seemed like a no-brainer to begin with pediatricians since this is the group that could make a large impact on earlier diagnosis,” she explained.
Meghean began her mission by sending e-mails to every physician member of Pediatric Associates, Florida’s largest privately owned primary care pediatric practice, with more than 200 providers. “I visited every single office that responded, providing them with literature and information packets on PI,” she explains. “During my visits, I encourage healthcare providers to look closely at any patient who is coming in sick all the time.” Meghean found doctors and staff very interested in her story and eager to learn more.” These days, Meghean carries informational material about PI almost everywhere she goes. “I may not be able to educate the world, but I can educate my little piece of it,” Meghean concludes. If I can make just one person’s life better because of my volunteer work with IDF, then it is all worth it.”
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