It started as a stomach ache. What followed was 2.5 years of multiple doctor visits, scans, blood work, confusion, misdiagnosis, and a search for answers that seemed to lead only to more questions.

First doctors thought it was a virus, then liver, spleen, or appendix problems, then a low platelet count, known as idiopathic thrombocytopenic purpura (ITP). Finally, in March 2009, Mitch Kaplan was diagnosed with myelodysplastic syndromes (MDS).

Living in Bergen County, New Jersey, Kaplan played Mr. Mom for much of his life to two children. Now a 61-year-old,…

Roger Contreras was a healthy, hardworking Texan construction worker when walking up a flight of stairs and carrying bricks started to become difficult. His first hospital visit in decades and multiple tests later, doctors diagnosed him with myelodysplastic syndrome (MDS) in July 2008.

Contreras came from a family with a clean medical history, free of cancer and high blood pressure. It came as a surprise, then, that a rare disease like MDS would choose Roger, who, at the time, “was building hospitals, not going to them.” Yet within the year…