Do you have the Sickle Cell Trait?
1 in 13 African Americans is born with the Sickle Cell Trait (SCT).
1 in 365 African Americans develops the disease.
More than 350 Cincinnatians live with the disease every day.
For 1 in 365 African Americans, Sickle Cell awareness is a way of life. As most people know, Sickle Cell Anemia (Sickle Cell) disproportionately affects people of African ancestry, but it also occurs in people of, Hispanic, Mediterranean and Middle Eastern descent. Unless you or someone in your family has the disease, you may not know that Sickle Cell is a blood disorder that happens when a person inherits two abnormal genes, one coming from each parent.
What most people do not know is that you can carry the Sickle Cell trait in your body, but never develop the disease. According to the Center for Disease Control and Prevention (CDC), one in 13 Black or African-American babies are born with Sickle Cell trait and carry the gene for the disease; however, only one in 365 Black or African-Americans develop the disease. Currently, unborn children are able to be tested for the trait through the mother’s womb. If you are concerned that you or your partner may carry the disease, visit your doctor to have your blood tested for abnormal types of hemoglobin.
Approximately 100,000 Americans live with Sickle Cell today. Most of us in our 40s and older had a family member who developed Sickle Cell, suffered excruciating pain and passed before their 25th birthday.
Thanks to great research, innovative treatment, advanced medicine and a continuum of care into adulthood, the life expectancy of persons with Sickle Cell today is between 40 â 60 years old. Many can manage their conditions with treatments specifically tailored to their bodies. Some are using medical marijuana, now legal in Ohio, to reduce the pain and minimize tissue damage. Medical marijuana can be inhaled through a vaporizer, smoked, eaten, applied to a lotion, spray, oil, or cream, and made into a liquid and applied under the tongue.
Since the FDA does not approve medical marijuana, your doctor will not be able to prescribe it, nor will it be covered by your insurance. Here are steps to follow to obtain medical marijuana through Ohio’s Medical Marijuana Control Program (OMMCP):
- A OMMCP-certified physician must confirm that you have a medical condition that qualifies. The physician must then create your profile in the Patient & Caregiver Registry.
- After your profile is created, you must confirm and complete your program registration through the Patient & Caregiver Registry.
- Purchase your medical marijuana from an approved Ohio dispensary licensed by the State of Ohio Board of Pharmacy. More information can be found through their Frequently Asked Questions.
Something many people do not know is that St. Jude Childrenâs Research Hospital in Memphis, Tennessee, is the pioneer in research for Sickle Cell. It is the largest program in the country and serves 850 patients. The first person in the world to be cured of the disease by a bone marrow transplant was at St. Jude.
In 2017, St. Jude launched a high-tech study called the Sickle Cell Clinical Research and Intervention Program. Their focus is on newborn to 25-year-old patients and moving from treating symptoms to finding a cure.
More than 350 persons in the Greater Cincinnati area live with Sickle Cell. Cincinnati has a great support system when it comes to helping and managing the disease, including the great work being done at Cincinnati Childrenâs Hospital and UC Health.
Cincinnati Sickle Cell Alliance Foundation is a non-profit community-based organization with resources to guide families and patients living with Sickle Cell. They host an annual 5k fundraising event in September and provide scholarships to high school and college students living with the disease. Donate today.
Cincinnati Childrenâs Sickle Cell Center coordinates newborn screenings and follow-up testing for Sickle Cell and all hemoglobin disorders. Patients are cared for from birth through adulthood. Couples who both have the Sickle Cell gene and make the decision to conceive a child may want to talk to a doctor first. Donate today.
University of Cincinnati Adult Sickle Cell Center provides comprehensive care as well as care for any secondary conditions that have been caused by the disease. To donate or volunteer call 513-281-4450.
There are plenty of ways to donate or volunteer with the groups above. If there are any other programs we have missed, please contact us at The Voice of Black Cincinnati.
The Voice of Black Cincinnati is a media company designed to educate, recognize and create opportunities for African Americans in the region. Visit our homepage, explore other articles, subscribe to our newsletter, follow us on Facebook or text VOBC to 797979 for local news, events, job postings, scholarships and a database of local Black-owned businesses.