Six years ago, St. Louis native Jacquelyn Whitney retired from KMOV TV Channel 4 after nearly 30 years of working in television production. Rather than flying south where retirees typically flock, Jackie headed west.
It was a day she thought she would never see, because she lives with sickle cell disease.
Sickle cell anemia is a serious inherited blood disorder of persons of color, in which oxygen-carrying red blood cells are stiff and “C” shaped rather than round, causing difficulty moving through blood vessels. Sickle cells clump together, causing severe pain episodes, blocking blood flow to limbs and organs. It can cause infections, organ damage and can be life-threatening.
In the U.S., the Centers for Disease Control and Prevention estimates 90,000- 100,000 cases of sickle cell. The disease occurs in one out of every 500 African American births.
“Indescribable joint pain” is how Whitney calls the sickle cell crises.
“Usually the pain would start in my arms or my legs and they were so extreme, that my father would take me over to the hospital, and of course, the doctors had no idea what was going on, but the usually treatment was they usually end up giving me a penicillin shot,” Whitney recalls. “Most of the time, while I was at the hospital, after about a few hours, the pains would subside.”
When Whitney was 8 years old, Dr. Helen Nash of St. Louis provided her and her parents with news that would shape the rest of her life.
“She explained to me that it was hereditary – that the only way you can get sickle cell disease is that someone in your family has to have either full-blown disease or they have the trait of it.
And, that I probably would still experience the same types of pain and episodes that I had been experiencing all of the early part of my life,”
she said. “After taking a big breath she said, ‘I will tell you that most people who have this disease never live past their teens.’”
Her doctor promised to work with her mom and her dad to see that she would have as normal a life as possible. And they did.
She got plenty of rest, avoided stress, ate well, excelled in school and embraced every activity she could experience.
“I thought, ‘Well, if I wasn’t going to be living past my teens, I’d better really enjoy myself between now and the time I get to be a teenager,’” Whitney said. Her growing up years were filled with family vacations, hunting, fishing, art and science exhibits, parades and picnics.
“I had a lot of fun, even though my whole life was punctuated with pain and hospitalizations. I can’t remember a year I was not hospitalized until I was like 25 years old or so.”
Fatigue, infections and having to take very strong pain medicines, such as Demerol and morphine during episodes were also a recurring part of her life.
“Another thing I kind of remember was every time there would be a big storm coming up in St. Louis, I would be ill,” Whitney said. “I would start having these pains, and we just couldn’t figure it out.”
Whitney made it through her teen years and high school and eventually went to college, although a bone infection jeopardized her life and delayed her studies.
She married, had children and a nice career. All the lovely things that most people take for granted.
“I never ever thought in a million years that I would ever live this long.” Whitney said. “When I was in my 30s and people were dying of sickle cell, I just knew that I was going to be the next person.”
She focused on working and providing for her children so they could survive without a mother, and giving them the fun childhood she had.
Whitney does many other things she was told because of sickle cell, she shouldn’t do, like fly on a plane.
“I was told I should never go overseas because of prolonged time on the plane would not be good for me and I have been all over the world, Germany…France…Italy…mountains 10,000 feet up in the air and I didn’t have any problems at all,” she said.
“I’ve been to Asia…and I noticed that when I went to other countries, I didn’t have any sickle cell problems per se. What I had to do is make sure that I had enough clothing so that I would not get cold.”
She began to think about it.
Dr. Beverly Morrison (who has retired from private practice in St. Louis) educated Whitney as an adult about managing her sickle cell disease.
“She took it upon herself to show me exactly what to look for when she sent me to get tests. She showed me how to actually look at my lab chart and we followed my hemoglobin,” Whitney recounted. “And she would take time – every time she would see something about sickle cell, she would make sure that I got a copy of it.
“When I went into the hospital, she was there to make sure I did not spend any time down in the emergency room. I was shot right upstairs and started my treatment right away.”
Whitney told her doctor about when she traveled and the weather was inclement, she would have a problem.
“But as soon as the weather cleared up, then my sickle cell would clear up,” Whitney said, of this peculiar occurrence.
Her health also fared worse when she traveled to the east coast.
She started booking places to stay when traveling that had a sauna, so she could soak in the heat to stave off the pain if she ran into trouble.
At a sickle cell conference several years ago, a weather shift became a defining event.
“It was warm the first part of the morning, and then it started to get colder and the barometer dropped and everybody in that room who had sickle cell disease had to get up and leave,” Whitney said. “People were going to hospitals; the doctors were helping people out. That proved to me that everything that I had suspected about the barometer and the barometric pressure* had a lot to do with my problems. “She discussed it with a meteorologist friend who explained that the barometric pressure changes rapidly on the east coast, due to the Atlantic Ocean and amount of water in that area.
“That was one of the reasons why I came to Las Vegas,” Whitney said. “The heat does not bother me at all. I am in better shape; I have more energy out here than I probably have had in a long time. I have delved into the community here and it is wonderful.”
Whitney has new physicians with knowledge of sickle cell for medical care, and at age 62, while everyone else is complaining about the weather, she is not one of them. “I am the only who is just smiling and sweating away.”
• Health Editor’s note – When the barometric pressure is lower, less oxygen is available in the air.
This change in oxygen availability generally not noticeable by most people but for people who have sickle cell disease, their blood is more likely to sickle and result in crisis at lower barometric pressures.
For more information on sickle cell disease, go to www.nhlbi.nih.gov or www.sicklecelldisease.org.
