Area association helps answer sickle cell carriers' questions about disorder

Sandra White counts herself as one of the lucky ones.

The Blairs resident doesn’t really experience pain anymore. Her crises stopped after her teenage years. She just gets tired on some days.

“My sickle cell is a little different. I feel fortunate and blessed,” White said. “I can’t explain it. My doctors can’t explain it.”

The intensity of how sickle cell disease affects the body can vary from person to person. The incurable, inherited disease is a blood disorder that affects the hemoglobin within red blood cells, which deliver oxygen through the body.

Sickle cell anemia is just one of many types of disease associated with different types of abnormal hemoglobin.

Want to know more?

For more information about the Sickle Cell Anemia Association of Danville-Pittsylvania County, call President Sandra D. Harris at (434) 489-1042.

Residents still have many questions about sickle cell disease and those dealing with it still need help. That’s why the Sickle Cell Anemia Association of Danville-Pittsylvania County is re-energizing, President Sandra Harris said.

“I’m learning, too,” Harris said. “That’s the problem right now in the community. People don’t know the details and specifics.”

The 37-year-old association hopes to encourage and help people with screenings to see if residents are carriers of the sickle cell trait. People who have the sickle cell gene can pass it on to their children. If both parents carry the gene, their child can be born with sickle cell anemia.

The association also wants to do more to help those currently living with sickle cell, Harris said. The group has 21 board members, two of them with sickle cell anemia.

One symptom of the disease is pain — at times excruciating pain during a crisis.

Normal red blood cells are flexible and flow smoothly through small blood vessels. With sickle cell, red blood cells turn into oblong, jagged cells that can get stuck on others of these misshapen cells in capillaries, blocking off oxygen to tissue, said Dr. Timothy Brotherton of Danville Hematology & Oncology.

“It’s like your body is in shock,” said Raquel Adams, who serves as a minister in Lynchburg and is a member of the association.

Adams can handle most of her crises at home, but goes to the hospital about twice a year with them. She encourages patients to be their own advocates while at hospitals, as she once sat in a waiting room for 12 hours.

Because the sickle cells can block oxygen from tissue throughout the body, crisis can result in various complications, including irreversible hearing and eyesight loss. Adams almost died with both of her pregnancies.

Psychologically, those with sickle cell don’t want to be identified as the “sickly” one, she said. They just want to do what everyone else does.

Adams wants more people to be compassionate about the disease, too. Because of the pain associated with sickle cell, patients receive painkillers for treatment. One pharmacist refused to fill her prescription because she didn’t look sick.

She still prays to God she can see her two children grown. A full-blown crisis can happen suddenly and one never knows the outcome.

“This is a faith walk. I think anybody that has any kind of disease, they have to have a kind of faith to carry them from day to day,” Adams said. “Either you choose to live or you choose to die. I choose to live.”

Testing for sickle cell can actually be done while the baby is still in the uterus, Dr. Brotherton said. He thinks if the community were more aware, there would be more prenatal testing.

Carriers of the gene may even have difficulties or be slightly anemic, Brotherton added. The critical time for dealing with sickle cell is during the pediatric period.

Almost all kids with it will lose their spleen early on, he added. The spleen filters blood. Those with the disease may also have problems with their kidneys.

As sickle cell patients often get blood transfusions, it’s important to make sure kids don’t get overloaded with iron.

Adults may be treated with hydroxyurea, which increases beneficial fetal hemoglobin that disrupts sickle cell crystallization, Brotherton said.

White sees Brotherton as her doctor. She doesn’t get blood transfusions and works through feeling exhausted.

“I basically do what everyone else does,” White said. “I do it all — it might take me a little bit longer.”

The 54-year-old already surpassed expectations that she and her older sister Barbara Harper, both with sickle cell, would die in their teenage years.

White just wishes her sister could experience less pain. Sickle cell pressure actually caused Harper’s leg bone to fracture. She had a total hip replacement and a shoulder replacement. Sometimes Harper’s daily pain is so severe, she won’t let anyone touch her.

Yet, Harper keeps active, adopted two kids with her husband and keeps busy living in South Carolina. Harper always helped White through the disease growing up and White stays inspired by her sister’s active lifestyle.

White serves on the sickle cell association board and hopes to help raise money for sickle cell patients needing help paying medical bills. The personal attendant for an autistic child started making jewelry as a hobby. Maybe she could sell her creations for the cause.

White feels blessed and just wants to help others with sickle cell. She prays for advances in the medicine to help her sister.

“My sister is amazing. She has sickle cell so bad,” White said. “I really get a lot of my strength and endurance from her.”