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!

I am the co-chair of the Southern New England Arthritis Walk, I work on planning the walk and getting sponsors. Each year I run a team called “Smile Through the Pain” and raise money to go towards research for arthritis. All year I travel around New England giving speeches about my AS and educating the public about the horrible effects of arthritis.

AS is awful but it also makes us stronger. Thank you for listening to my story”

Connecticut United States of America

8 Responses to “A.S. Face 0545: Cindy DeLillo”

  1. Dear Cindy,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Thank you for sharing! It really sucks being in college and dealing with this lol, but you are not alone! There are a bunch of us here who are going through the same thing!
    Alex S.

  3. Cindy: Welcome to our group! I moved to Michigan from Connecticut 19 years ago this month. (I try to go back home once a year, though). Sorry to hear about your pericarditis and uveitis. It is a shame that young people like yourself have to suffer! There is no need for you to be embarrassed now–you are in good company of people who understand what you are going through! Wishing you all the best! Stephania

    • Thanks so much. I am no longer embarrassed but when I was a sophomore in high school I was. I’ve learned to accept my disease.

  4. Thank you for sharing your story. You are too young to have to deal with this disease, but you seem to have such a positive outlook on life. You are such an inspiration!

  5. Cindy you are by far the most amazing and most motivating person I know. I am so happy to call you my friend and even happier to call you family. Love you cousin so proud of you
    Love your cousin Kyle

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