Sickle Cell Awareness Month with Cora

For Sickle Cell Disease Awareness Month, Speak Now for Kids spoke with Cora’s mom, Dorina, about her daughter’s experience with sickle cell disease (SCD). At just one week, Cora was diagnosed with sickle cell disease and has been treated at Children’s National Health System since she was one month old.

SCD is an inherited blood disorder that affects red blood cells, resulting in anemia and severe pain. Even though this disease isn’t widely talked-about, approximately 70,000 to 100,000 Americans have SCD. We’re honored to have Dorina share her daughter’s health journey with us and eager to learn more about the signs and symptoms of SCD.

Speak Now for Kids (SNFK): What impact does Cora’s medical condition have on your family?

Dorina: Cora’s condition has heavily impacted our family. Given the risks for a crisis in cold conditions, we are careful about our daughter playing in the snow or water. We are mindful of dressing appropriately for cold conditions and only allow swimming in a heated pool. Similarly, other summer activities like running through a sprinkler always have to be carefully considered. Fortunately, Cora has never had an SCD crisis from being outdoors during the cold and only twice after playing in cold water. All school staff and camp counselors are routinely reminded of her need for hydration and rest.

Traveling has required extra planning as well. We want to make sure there is always a supply of water in her backpack or in the car. When outside of Washington, D.C. — where we live — we always want to know where the hospital is located. When we recently traveled outside the United States, we had to make sure there was plenty of water for the duration of the flight and we had contact information for hematologists at our destination, in case Cora needed care.

We are also impacted by the amount of time our daughter must visit medical professionals and the hospital. Cora has frequent follow-up appointments, so it is common for her to miss school. She is also required to go to the ER every time she has a fever. If the medical staff determines that she needs to be hospitalized, then we have to work around staying in the hospital, reporting for work, coordinating school work, and securing child care for our younger son.

SNFK: Why is it important to raise awareness of SCD?

Dorina: SCD impacts many people beyond the child who has it. However, funding for sickle cell is much lower than other conditions that affect even smaller groups of people. Raising awareness can help increase research funding. Increasing awareness of SCD can also help parents justify to their employers the amount time taken to care for their children. Sick leave taken to care for their children is often exhausted by the end of the year — especially if the child has been hospitalized during the year. Medical professionals, such as primary care physicians and dentists, who do not specialize in SCD also need increased awareness. It is not unusual for children or parents to know more about SCD than some medical professionals.

School officials may also need to provide additional accommodations for a student with SCD. For example, they may have to provide flexibility to allow students with SCD to take frequent water and bathroom breaks, arrange for water during field trips, and coordinate time for make-up work when the student misses school. Without being aware of the risks associated with dehydration, fever, and cold weather, school officials will not be as understanding of the student’s needs.

Parents can join the effort by learning more about SCD and discussing the signs and symptoms with their friends and families.

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