DONOR JOHN YOUNG & FAMILY SEE IMF’S SERVICES AND INFORMATION AS ‘INVALUABLE’

In 2006, Cynthia Young suffered from leg pain. For two years, the pain continued and was misdiagnosed. Cancer wasn’t even on the radar. It wasn’t until November 2008 at Bethesda North Hospital in Cincinnati, Ohio, that she was told she had multiple myeloma. Unfortunately, Cynthia—or Cindi as her friends and family knew her— lost her long battle with the disease on January 25, 2022.

Looking back to that time, her husband John Young recalls that a cancer diagnosis just “hits you right in the face.” He remembers her early symptoms as a mystery. Learning of a disease that they had never heard of before was a mystery as well. It was at the time of Cindi’s diagnosis that the Youngs were told by the nurses at the hospital that the International Myeloma Foundation (IMF) was an organization that supported families like the Youngs. After getting in contact with the IMF InfoLine, the Youngs took full advantage of the foundation’s resources. IMF literature kickstarted their learning process; they were steered to a local myeloma network group. Later in the journey, the Youngs attended a two-day IMF Patient and Family Seminar. As John recalls, “It was focused on patients and caregivers, with a combination of lectures and breakout sessions. The information and the opportunity to share stories and learnings with others was invaluable. Cindi was a fighter, and all of this helped build her optimism and hope.”

Looking back, John wishes more healthcare professionals understood the intricacies of diagnosing and treating myeloma. He said, “The symptoms weren’t understood by several doctors. She had been misdiagnosed for multiple years with aching pain in her legs. They thought it was something vascular and didn’t figure out it was cancer-related until fractures occurred. The local medical facilities followed a standard protocol for treatment that did not include some leading research options.”

When the Youngs encountered the IMF, John recalls that it was not just the educational materials that helped immensely. They were also able to connect with major myeloma experts and research centers. In hindsight, he wishes they initially had taken advantage of pursuing answers at a center of excellence like Mayo Clinic, which they later used for treatment. Fast forward to today, early recognition and corresponding tailored treatment options are now available on a broader basis. Given this, John encourages others in need of better answers for any illness to engage with a center of excellence for at least a second opinion. Also, John says that there are three key things the IMF did to improve Cindi’s myeloma journey.

The IMF provided “an updated flow of treatment options, new research, and literature.”