CHARLOTTE, NC (WBTV) - Sickle cell. Do you know what it is? Or what it's like to live with the disease?
Sadly many don't. It's just not talked about enough. The disease is especially prevalent in African-Americans and Hispanics. WBTV's Christine Sperow sits down with one woman in Charlotte, who's telling us about her fight that basically began at birth.
"It's not something that's contagious. You can't touch me and get it. Your parents have to be carriers to have a child born with sickle cell," says Ensia Yaisrael.
That explanation begins Ensia's journey with the genetic blood disorder. You would never tell something was wrong in a childhood picture of her at around two years of age. She says it was taken around the time doctors diagnosed her with sickle cell.
"I had a crisis in my mouth as a child," Ensia says about one of the times she experienced sickle cell symptoms. "Very painful, my jaw was swollen, it just hurts. Your body just hurts. It hurts for people to touch you."
Someone with sickle cell makes an abnormal amount of what's called "sickle hemoglobin." It causes the red blood cells to shape abnormally and fail to circulate through the body, limiting the oxygen flow the body needs. The pain that ensues strikes without notice.
"Imagine a straw with a spiked cherry trying to get through this straw. It can't get through there but it's trying and trying. Now there's pain there. That area can be in my legs. That area can be in my back. That area can be in my arms," Ensia explains. "My parents would live in fear that I would die before 12 years old."
Can you die from sickle cell? We asked Dr. Jane Hankins, a hematologist/oncologist at St. Jude Children's Research Hospital in Memphis, Tennessee. She replied, "That's a good question. In the past, many years ago, yes."
St. Jude is widely known for its breakthrough pediatric cancer treatments and research, but it also has one of the largest pediatric sickle cell programs in the country. Dr. Hankins says the discovery of the drug called hydroxyurea has moved treatment in a positive direction.
"When you take the hydroxyurea that convinces our body to go back to when we were babies and produce the fetal hemoglobin again," says Dr. Hankins. "So the fetal hemoglobin inside the red cell competes with the sickle hemoglobin and prevents those rigid cords to form. This prevents the distortion of the red cell, maintains the cells nice and round, helping it circulate better and carry oxygen better."
Ensia says of all the treatments hydroxyurea, for her, has been a game changer. Remember she said her parents were told she wouldn't see adulthood? Today Ensia is 37 years old!
"When I was younger I would ask why me. Now that I'm older I ask why not me?," says Ensia.
That's the fighting spirit Ensia says she will continue despite the odds, until there's a cure for sickle cell.
Ensia wants to start a non-profit where she can mentor children and adults with this disease. She invites anyone with sickle cell to reach out to
her on Facebook.
Here are some local organizations providing sickle cell services to patients and families: