The story of Tracey
My son Anthony was diagnosed with APECED on 9/16/2013 it is an extremely rare recessively inherited genetic disease that affects only 500 people worldwide, 150 of those in the US. It is an autoimmune disease resulting from a genetic defect. The body’s immune system malfunctions and attacks it’s own body tissues. It took a year and a half of doctor visits in NY & Boston MA and a huge battery of blood work, x-rays & testing to finally get a diagnosis for Anthony. It affects his joints, hair (he lost all of his), teeth (he has no enamel) and most of the organs. A lot of things that we saw early on were attributed to other things or just overlooked. Thankfully Anthony has been holding his own & doing well. He is a high school senior this year and was on the bowling team, he enjoys snow boarding, fishing & he is looking forward to attending college in the fall. We are hoping to help raise awareness about the disease in hopes that it will lead to additional research and treatments.