The story of Kay
It sometimes takes years to get a diagnosis if you have a rare disease. I went through years of being told I was just a worried mother before my son was finally diagnosed with Camurati-Engelmann’s. I was shamed and ridiculed by medical professionals until we found an orthopedic specialist who recognized the disease. At the time, fewer than 100 cases had been identified worldwide! There are now still only about 200 worldwide, two of which are my son and grandson. Unfortunately, very little research is done on these rare diseases and, consequently, very little chance of finding an effective treatment or a cure.