Advanced and experienced hematology and cancer care.
45 Years Young with Sickle Cell Anemia and Advocacy

Nilda was diagnosed with Sickle Cell Anemia in 1998 and has been in treatments for all these years. This is her story:

Born in New York at Columbia Presbyterian Hospital, my parents are from the Caribbean as my Mother is from the Dominican Republic and my Father is from Puerto Rico. Neither knew their genotype upon marriage as it was not a requirement in 1977. 

The youngest of 3 and proud to share my age of 45yrs young as individuals born with Sickle Cell Anemia are often given a life expectancy upon birth. Unfortunately, the life expectancy was proven to be true upon my cousin’s death at 20. She and I were the only individuals born with Sickle Cell Disease in our family, and she transitioned due to a common complication called Acute Chest Syndrome. 

Sickle Cell Disease (SCD) is a hereditary illness in which both parents must pass down the gene. In essence, sickle cell is a bone marrow defect in which the red blood cells are shaped like a crescent moon, and the accumulation of cells causes a block in receiving oxygen resulting in what is known as a “pain crisis” as its organ damage. A pain crisis can occur without warning, and it is excruciating. Due to my illness, I have developed 11 complications and 13 surgeries.   

Oncology Specialists of Charlotte (OSC) is not simply an appointment to know the levels of my blood RBC, WBC, platelets, or hematocrit. In my heart, OSC is an extended family.

I am currently 45yrs young, and I became a patient in 1998. I was initially a patient of Dr. Boyd. In 2000, I experienced one of my most frightening complications, a pulmonary embolism which lead me to a coma for over a month. The nurses currently working at OSC were my nurses from Unit 3A or 7F of current day Novant Health. After I regained consciousness, I was told Dr Boyd remained with my mother until I was stable. Although Dr. Boyd retired, I witnessed the parallel form of practicing medicine from Dr. Favaro. 

Dr. Favaro is more than my hematologist, as he ensures my overall wellness is being managed. His colleagues have been a point of contact for all of my procedures. However, a primary reason I value OSC is that we as patients continue to see Dr. Favaro, Dr. Shehadeh, Hadley NP, and Brooke NP when admitted. If I do not require admission, I am evaluated for the possibility of receiving an infusion treatment which is vital to individuals with SCD as it may manage the pain crisis without requiring hospital admission. 

My family is my support group and I have not had a visit without my mother being present as she is my strength. On days when I am not experiencing discomfort, I enjoy watching movies, maintaining and decorating my home. My family and I look forward to a tradition my grandmother started to visit Disney World yearly, and we look forward to resuming our tradition as we postponed our travel during the pandemic.

My experience living with Sickle Cell Disease sparked my advocacy for participating in advisory councils to provide a patient perspective. I worked under three governors on the Government Council for SCD and I dedicate myself to raising awareness regarding the importance of nutrition, exercise, blood donation, and the bone marrow registry within the Hispanic community to increase the percentage of finding a match for the cure. 

Locally, I am proud to be on the Board of Sickle Cell Partners of the Carolinas as we have our first golf charity event for World Sickle Cell Day, “Sickle on the Green” in Charlotte. One of my proudest advocacy accomplishments this year is participating in a Webinar in collaboration with the CDC and ACEP (American College of Emergency Physicians) called Breaking Down Barriers to ED Care for People with SCD https://www.cdc.gov/ncbddd/sicklecell/stories/nilda.html as well as starting my foundation called Sickle Rose. 

I am grateful to Oncology Specialist of Charlotte for raising awareness for Sickle Cell Disease and for being my medical family for the past 26 years.

By Madeline Groves | Posted in Front Page News | Leave a comment

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