If you are a parent to a child living with sickle cell anemia it is paramount to learn as much about your child’s condition as possible. Arming yourself with information surrounding the condition can help identify which behaviors and symptoms to expect, as well as be knowledgeable to answer any questions your child may have about their sickle cell.
What is Sickle Cell Anemia?
Sickle cell anemia, seen primarily in the Black community, is the most common inherited blood disorder in the United States, affecting about 100,000 Americans – with 1 in 400 infants born with the condition each year. This rare disorder causes the production of abnormal hemoglobin, the molecule that helps red blood cells carry oxygen throughout the body.
The condition is associated with symptoms, such as periodic episodes of pain – which can vary in intensity and duration. This pain develops when sickle-shaped blood cells block blood flow through tiny blood vessels in your child’s chest, abdomen, and joints. The disorder also can decrease life expectancy by 25 to 30 years. When your child has sickle cell, blood is chronically low in oxygen—which can also damage organs (kidneys, spleen, and liver) and nerves.
Helping Your Child Stay Healthy
Children with sickle cell disease (SCD) are at increased risk of infection and recurrent painful episodes during childhood. These may lead to multi-organ damage, associated with poor prognosis and early mortality. Therefore, as recommended by the National Institutes of Health (NIH), it is important to start disease-modifying therapy as early as possible.
In addition to medication, there are many things parents can do to help their child manage the condition, including:
- Being present at all doctor’s appointments to share any concerns or symptoms
- Making sure your child takes their medication as prescribed by their doctor
- Potentially following up with certain specialists if any complications arise from their condition
- Helping your child avoid pain triggers, which can sometimes include hot temperatures or anxiety
- Encouraging your child to develop healthy sleeping habits and stay hydrated
Additional Sickle Cell Resources
Despite some advances in research treatment options for sickle cell, significant gaps remain in the translation of this research into viable therapies, and a far more concerted effort is needed to address this major health issue. Now is the time to talk about what can be done to help treat this genetic disorder.
If you or your loved ones are looking to learn more about sickle cell anemia, there is a new video series sponsored by Medunik USA, a company dedicated to improving the health and quality of life of Americans with rare diseases. “What You Need to Know About Sickle Cell Anemia” is a four-part video series hosted by Dr. Corey Hebert, MD, Chief Medical Officer at Dillard University and a well-known medical broadcast journalist. The videos provide information on symptoms and aim to help parents better understand the disease following their child’s diagnosis, including treatment options.
Disparities in healthcare surrounding African Americans is evident with how the community has been disproportionately impacted by sickle cell and other diseases and conditions – most recently COVID-19. Right now, sickle cell patients without the disease have also been struggling to refill life-saving prescriptions, as well as get necessary transfusions due to social distancing measures. As a parent, you may be more cautious to visit medical offices to lessen the chances of coronavirus infection. Also, early data that has been collected nationwide by hematologists indicates a seven percent mortality rate among those with sickle cell who contract COVID-19 — with roughly 20 percent experiencing “severe” to “critical” versions of the virus.
When your child suffers from a condition that impacts their day-to-day life, it is key to have access to the necessary information and resources to best take care of him or her. Now, more than ever is the time to talk about what can be done to help elevate conversations about conditions that highly affect the Black community, including sickle cell anemia, in order to improve the social health and quality of life for our children. For more information on sickle cell anemia or to watch Dr. Hebert’s video series, please visit www.medunikusa.com.