Our Walk for PI: Indianapolis 2019 Team Page

GRACIE STRONG

GRACIE STRONG

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Iʼm Grace, and this is my story.

At age three months I developed a virus in my lungs, RSV (Respiratory Syncytial Virus). I was in the intensive care unit (ICU) for approximately a week. I received antivirals, antibiotics, bronchodilators(inhaled medication to open the airways in my lungs), and steroid medications, as well as oxygen. Over the next five years I visited my pediatrician, specialist after specialist, and hospitals often with recurrent infections in my lungs and ears, as well as multiple testing. I was diagnosed with Asthma and started taking daily inhaled medication for my lungs, but why infection after infection? At this point, I required antibiotics and steroids monthly. I had three ear tube surgeries, tonsil and adenoid removal, vocal cord nodule removal, as well as multiple hospitalizations for
pneumonia. All the doctors said I was ‘just a sick kid”. About age seven my lung and ear infections started to decrease, and I began to get recurrent sinus infections. I had two sinus surgeries over the next few years and by age 12 I was taking antibiotics daily and steroids almost daily. I got super sick and was admitted to the hospital in ICU with RSV again. An Immunologist ordered numerous tests. Within 24 hours blood tests showed my Immune System was severely deficient. In February of 2013 I was Diagnosed with a genetic disease, Primary Immune deficiency called (CVID) Common Variable Immune Deficiency. I began Immunoglobulin Therapy at age 13. I received IVIG infusions every 4 weeks to help boost my Immune system. This does not cure my Immune
Deficiency it just helps. Iʼm 19 years old now, I still get sick often and require antibiotics, but I try my best to lead a normal life. I love to Golf, draw, listen to music, and hang out with my friends and family. My veins are no longer easy to access, so I started on subcutaneous therapy about a year ago, and Iʼm doing well with the therapy. Iʼm so thankful for God, my mom, dad, sister and brother, as well as, friends, family, my healthcare team, and the Immune Deficiency Foundation. I appreciate all you do for me. I truly have an awesome support system.

Much love and blessings,
Grace

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