Because primary immunodeficiency diseases (PI) are so rare, many doctors are unfamiliar with how to diagnose and treat them. This is why a PI diagnosis can take some time. Doctors often try ruling out other problems first, and as such, the average amount of time from the onset of symptoms to diagnosis is between 9 and 15 years, based on survey data from the Immune Deficiency Foundation (IDF). Unlike people with more common conditions, an individual with PI may be the only person with PI who the doctor is seeing, and the physician may be unfamiliar with all the resources available. These factors are among the driving forces in the development and growth of IDF’s outreach to the medical community.
“A speedy diagnosis is essential,” points out Linda Csiza, who volunteers as an IDF Liaison, who are volunteers trained to specifically connect and build relationships with healthcare professionals. Liaisons keep medical staff apprised of new IDF programs and materials.
“While things may be getting better,” Linda says, “there is still a general lack of awareness of PI within the medical community.”
As a physical therapist, Linda has both an academic and professional background in healthcare. But she has more than a scholastic interest in PI. She has lived with Common Variable Immune Deficiency (CVID) most of her life. Diagnosed in 1956 as an infant, she now uses her story to help raise awareness of the disease among doctors and other healthcare professionals. In offering their time and talent, volunteers like Linda make significant contributions to the PI community. IDF Liaisons are critical to the mission of IDF. They ensure that appropriate physicians are aware of the symptoms and that those physicians have access to the latest information and research.
Volunteering isn’t new to Linda. She is heavily involved in the American Physical Therapy Association and sits on the Board of Directors for the American Board of Physical Therapy Residency and Fellowship Education.
When asked for her advice to those considering becoming an IDF Liaison, Linda suggests starting with your own healthcare team.” With 16 specialists, Linda explains that only her two immunologists knew PI, the others did not.
Linda quickly adds to that suggestion, “Don’t feel intimidated. You don’t need a medical degree to raise awareness,” she explains. “The technical information is supplied by IDF through such resources as the Patient & Family Handbook or the Diagnostic & Clinical Care Guidelines. The most effective part of my visit is sharing my personal experience with PI and how it impacts my life.”
While volunteering for IDF means different things to different people, it has the same outcomes—it provides hope to people with PI and makes a positive difference in their lives. Linda knows she is making a difference, one medical office at a time. She finds healthcare staff to be open to learning more. “They are always happy to receive information. They can read all the medical journals they want but the personal aspect that an IDF Liaison provides is something special and unique.”
Thank you to Linda for sharing her story and your dedication to promoting awareness!
Educate, empower, and engage! To learn more about becoming an IDF Liaison and other volunteer opportunities, click here.