A.S. Face 0545: Cindy DeLillo
My story is “My name is Cindy DeLillo, I am 21 years old and currently a senior at Roger Williams University. There I am majoring in marine biology with double minors in aquaculture and global communications. When I was 16 years old I was diagnosed with Ankylosing spondylitis. While growing up I always had odd pains and easily broke bones. Doctors just thought I was looking for attention. For a few weeks in the spring of my sophomore year I was complaining of chest pain. My pediatrician thought I had a virus or infection so I was put on multiple series of antibiotics. Unfortunately none of the medicines worked. The pain kept getting worse and on Mother’s day I made my way to the hospital, feeling terrible about ruining my mother’s special day. Then about week and half after the hospital visit, which started a battery of tests, my rheumatologist revealed her presumed diagnosis. I remember not even knowing what Ankylosing spondylitis was or what was wrong with me. I was embarrassed of my disease and did not want anyone to know what was wrong with me because I thought arthritis was just for old people. But I was very wrong and I am now part of the Arthritis Foundation to teach people that kids get arthritis too. My disease has affected so many aspects of my life. I have had Pericarditis twice, which is a heart virus and very painful. My eyes have been attacked by uveitis multiple times and eye loss has happened. I live everyday in pain it doesn’t go away just varies. I am scared to talk during doctor appointments because if I say too much then they will find out something else wrong with me. I have to also endure jokes about my illness, fights with police officers when they accuse me of using my “grandparent’s” handicap sticker. I lost my prior carefree life. I was a brown belt in karate and competitive sailor. I loved to have fun and try adventurous things like rock climbing. But that all ended with my disease because now I have to pace myself, learn that with every good day that I over due it comes three very painful days. My medicine, health and pain has become first priority over fun. Now I have fused disks and pinched nerves in L5. I live everyday in pain but still scuba dive, perform research at college and LIVE!
AS is awful but it also makes us stronger. Thank you for listening to my story”
Connecticut United States of America