Sonya Shiverick of Hinesville has lived for 37 years with sickle-cell anemia, a painful hereditary disease that, according to WebMD, attacks red blood cells, changing their shape from round to crescent moon or sickle-shaped.
These misshapen blood cells tend to stick together and block blood vessels that carry oxygen throughout the body. Shiverick said the blood clots cause excruciating pain, and the interrupted flow of oxygen can damage vital organs.
“I was born with it,” said Shiverick as she adjusted the plastic tube under her nose that supplies oxygen from a large respirator she carries with her wherever she goes. “I started having complications from the disease when I was 18 months old. I lost the ability to walk for a while when I was a child.”
Shiverick said her parents both were carriers of the disease, but did not have it. According to WebMD, a child has to inherit a sickle-cell gene from each parent to develop the disease, but even then it’s not a certainty. One of her siblings died from the disease, while another sibling is a carrier.
Her husband, a soldier currently serving in Korea, does not have the disease and is not a carrier. Consequently, neither their 21-year-old daughter nor 14-year-old son has the disease. She said they do carry the traits of the disease, however.
“The biggest thing with sickle-cell disease is managing the pain,” she said. “They told me I wouldn’t live after age 12. Although I’ve had several bouts with death, my faith keeps me going. I’m a God-fearing woman. I’ve prayed my way through many pain crises.”
Shiverick said she doesn’t believe God gave her this disease to punish her, but to allow her to serve as a witness to others. She said a lot of her friends tell her they admire both her physical strength and faith she exhibits to get through this lifelong trial.
She said living with the disease as a military spouse has its own difficulties, mostly due to the inconsistencies of care. The military doctor at one installation may be familiar with the disease and the pain associated with it, while another military doctor may not.
“Right now, I’m 100-percent satisfied with my primary-care case worker on-post and my hematologist off-post,” she said. “I receive most of my care from my hematologist. If I could say something to emergency-room doctors who aren’t familiar with the pain caused by sickle cell, it’s to be more compassionate. When we show up in the emergency room, we’re there to get treatment for the pain, not to lollygag around.”
Shiverick said she wants all medical-care providers to understand the intense level of pain the disease inflicts on its victims so they will better understand how to help them. While acknowledging there are other sickle-cell survivors living in Liberty County, she wants to share her personal experience coping with sickle cell so that other members of the community will be more aware of the debilitating disease.
“I can have 10 pain crises a year,” she said. “With my husband gone, it’s pretty much all on me, but sometimes I rely on others for help.”
Autumn Rain, manager at The Columns at Independence townhomes, said she and her staff are well aware of Shiverick’s medical needs. She said they make every effort to support her, to include providing an additional key for Shiverick’s apartment to her father, Joshua Barrett, who lives and works in Hinesville. Rain said her staff has called 911 for Shiverick and guided the ambulance straight to her apartment.
“I choose to survive the odds in living with sickle-cell anemia,” Shiverick said. “Make no mistake (though): I don’t claim it as my disease because it’s not. I’m simply challenged by the symptoms that occur from inheriting the genetic disorder.”