The St. John community gathered Saturday in Franklin Powell Park to offer love and support to those living with sickle cell disease.
The Walking with the Stars event promoted awareness about the disease and raised funds for the newly formed V.I. Sickle Soldiers Support Group Inc.
The event featured performances from the Love City Pan Dragons, the Dynamic Dancers, Island Fire Gina, Empress I, Eva Chinn, and Broheem with Love. Attendees also had the opportunity to win raffle prizes such as a new TV, a Bluetooth speaker, dinner for two at Lime Inn restaurant, a day trip with Seashell Boat Charters to any island in the British Virgin Islands, a sunset sail with Cruz Bay Watersports and more.
V.I. Sickle Soldiers Support Group Inc. is the brainchild of Virgin Islander Aniece Evans. Although all children in the territory are tested for sickle cell at birth, Evans was misdiagnosed and lived an otherwise normal and active life until she got pregnant at the age of 22. She received her first diagnosis after she went into early labor six months into her pregnancy.
September is recognized nationally as Sickle Cell Awareness Month.
Sickle cell disease affects hemoglobin molecules in red blood cells, distorting their shape from round to crescent, or sickle, shaped. This weakens the blood cells, leading to anemia and a limited ability to get oxygen rich blood to the person’s cells and tissues. People are likely to be born with the disease when both their parents carry the trait for it.
The disease, common in people of African and Mediterranean descent, is a cell mutation that developed due to the presence of mosquito borne illnesses such as malaria in these areas. People with sickle cell disease are prone to infections, high blood pressure, kidney problems, joint problems, problems staying hydrated while playing sports, increased risk of stroke or blood clots and many other health complications.
People with sickle cell disease in the territory face multiple challenges. Besides issues of the affordability of care, the system in place is deficient in comparison to health care centers on the mainland.
“We have no hematologists specifically for children here. We have pediatricians with some understanding of the disease, but having young patients see a child hematologist is ideal. Without it their care can be a bit disjointed,” explained Dr. Erole Hobdy.
Hobdy is a licensed hematologist who practices in St. Thomas and Tortola, and she attended the event to use her 14 years of experience to answer questions from the community.
Hobdy noted the lack of education among adults, and discussed important missing pieces in sickle cell health care.
“Sickle cell centers elsewhere have a full team to attend to patients. You have a doctor, a nurse, a social worker, and a therapist. Many persons with sickle cell have disabilities and psychosocial issues associated with the disease. It falls upon the V.I. government to allocate the funds and address these issues,” Hobdy said.
Since beginning treatment for the disease in 2004, Evans has fought hard for her health. She has struggled with blood clots, ulcers, multiple surgeries, a stroke with accompanying brain damage, and she also had to have her large intestine removed to prevent the spread of infection.
During recovery she looked to the community to seek help and emotional support and found that the U.S. Virgin Islands did not have the support network she sought.
“I decided to start an organization that can help people like me emotionally, physically, and financially. Having sickle cell takes a toll on you and your family,” Evans said.
V.I. Sickle Soldiers Support Inc. aims to assist families with the cost of treatment, as well as offer necessary emotional support during treatment. The organization’s motto is, “Don’t wait too late to know your trait.”
“With this event, we hope to support people like me. We hope to make sickle cell loud. It’s something that needs to be heard about. We hear about cancer every day, but no one is really talking about sickle cell like we need to. We need to know about what is affecting our people and our community,” Evans said.
When speaking of the need to get tested and seek treatment, Hobdy said, “Many people may not know that they are sick, misdiagnoses do happen. I recommend that everyone get tested with their doctor. The test is called hemoglobin electrophoresis, and you get the results back in about a week. If you were not tested as a newborn, get checked now.”
“Even if you do not have the disease, you will procreate at some point, and you should be able to make an informed decision,” Hobdy explained.
While addressing the crowd, Evans said, “One minute you’re here, the next minute you may be gone. Please understand what sickle cell is before you speak on it.”
The name V.I. Sickle Soldiers Support Group Inc. highlights how living with sickle cell can truly be an arduous battle, but with its mission it demonstrates that the fight does not have to be fought alone.
Inquiries and donations can be made by contacting Aniece Evans at 340-690-1933.