Meet Michelle Chieco: President of CAF’s Westchester Chapter, Registered Nurse, and Thalassemia Patient

August 1, 2018 – For the past year, Michelle Chieco has been leading the CAF Westchester Chapter as Volunteer President. We thank her for her service, and for sharing her story with the community.

Michelle as a toddler with parents Peter and Rose Ann Chieco

My name is Michelle Chieco and I am a 29 (almost 30!) year old with Beta thalassemia major. I grew up in Westchester NY with my amazing parents and two sisters. I was diagnosed at 8 months of age and received my first blood transfusion right before my first birthday. My parents faced challenges in trying to find a hematologist who was knowledgeable of the condition. We were lucky to find a local hematologist who was skilled and also to have the guidance of Dr. Cohen at Children’s Hospital of Philadelphia. I always received treatment at a small community hospital which often meant very long transfusions and no exposure to other children with thalassemia.

Early adulthood was difficult, I definitely struggled with compliance to my desferal pump. I was lucky that the oral chelators were just starting to come to market and I was able to receive one prior to FDA approval with the help of the Foundation.  My family was supportive during this time but also worried about if I was truly taking the best care of myself. I eventually realized that I had to be put my pump on or take my medicine for myself, not because my doctors and parents were telling me to do it. If I wanted great things out of life, it was up to me to make that happen by taking good care of myself.

I’ve carried that perspective with me for many years. Even on the days where I am too tired to wear my pump or don’t want to take another pill I know I am making the right decision for myself. I am doing it so I can live a long full life, spend time with my husband and family and ultimately start a family of my own.

Michelle and Alicia at Disneyland

The Cooley’s Anemia Foundations is an integral part of my life. The Foundation, along with my parents, was instrumental in how I looked at the disease. It was never a negative thing for me; it only led to new opportunities. From traveling to different patient conferences, to fancy dinner dances and getting to go on the Columbus day float, it always was a positive fun experience.

The most valuable part of the Foundation is the connection it provides to other patients through events like the CAF Patient-Family Conference. Meeting other patients my age when I was a school-age child really was incredibly powerful. I will never forget meeting Alicia Somma-Hodgskin at Disneyland many years ago. Her positivity about thalassemia made me feel like I could also have that same outlook. Meeting Ralph and learning that he was a nurse was a direct reason why I became a nurse as well.

I am passionate about being a nurse to patients with chronic conditions similar to thalassemia. I am passionate about ensuring they, too, know they can have full lives if they take care of themselves. I especially enjoy getting to know my patients over the years and seeing them grow up and helping them through the difficult young adulthood years.

Thanks to my amazing husband and incredible family, I am thriving. They give me positivity and a constant reminder that I need to take care of myself so I can be there for them for many years to come.

I think the most important thing I want the thalassemia community to remember is that thalassemia is not a death sentence. It is a treatable disease that can be managed. It will be difficult at times and there are sometimes complications but staying ahead of things and being your own best advocate is the best way to live a healthy life. People with thalassemia can truly do anything they want in life!

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