By VICKI BROWN
Islandton resident Danielle Jamison suffers from Sickle Cell Anemia, an inherited disorder where her red blood cells are shaped like sickles, or crescent moons, and unable to take oxygen to the body.
“My parents found out I had sickle cell when I was 4 months old. I had swelling in my arms and legs, and I was crying a lot. We went to MUSC, had tests and discovered I had sickle cell,” said Jamison.
Typically, red blood cells are round and move easily through veins and blood vessels. But when the cells are shaped like sickles, they don’t flow easily, they get sticky and can mass together creating blockages, pain, infections, fatigue and strokes. The sickle cells also die off quickly which leaves the individual with a shortage of red blood cells making him or her anemic.
This disorder can affect anyone, but is most prevalent in African Americans. There is no cure other than bone marrow transplants or stem cell therapy, all of which have their own set of risks. But there are some medications that can improve the life of those with sickle cell.
One is Adakveo, the first, and so far, the only medication used to treat the disorder by using an infusion that attaches to the sticky blockages making them less sticky and moving the cells onward.
Jamison had volunteered to participate in different trials of medications over the years and had come to know many of the people from the Novartis pharmaceutical company that was working on developing a drug to combat sickle cell crises (painful flare ups). “My doctor set me up with Adakveo, which was an extension of a previous trial of medication. When this opportunity came around, I decided to go with the trial,” Jamison said.
“My medication is with an IV. It takes 30 minutes once a month. I have noticed a huge improvement. Before, I never had energy. I couldn’t manage my pain at home at all. I spent so much time in the hospital. I couldn’t get up and go whenever I wanted. But I have been taking this medication, first in a trial period and after when the FDA approved it, for three years, and I am so much better! Now, I can get up and do things. Staying out of the hospital is a big bonus for me. It gives me time to do things I want to do. And I can take care of my daughter,” she said.
Jamison’s daughter does not have sickle cell, but she does carry the trait. She could pass sickle cell on to her children if her husband has the trait also. “My sister has sickle cell as well, and she takes the same medication,” said Jamison. “She has noticed an improvement, too.”
But even though their health has improved with this new medication, they still have to be careful, especially during the pandemic. “I have been frightened of Covid, so I have stayed at home for a year. It is very difficult for sickle cell people to recover from Covid. I am fearful. I have an 11 year-old daughter to take care of,” she said.
The company Novartis, which produces Adakveo, was looking for a patient willing to be a mouthpiece for the infusion and give a testimonial to be used in advertising the drug. The patient they chose is Danielle Jamison, who was filmed as part of the Adakveo advertising campaign.
When Novaris contacted Jamison and asked if they could film her, she thought it be used to help other people with sickle cell become less fearful of taking the drug. She had no idea that her picture and the film would be used in a national advertising campaign for the company.
“I was happy and so shocked!” said Jamison. “I had been working with different trials with the Novaris Company and knew many people there. They knew my story. When they asked me to help, I was so excited,” she said. “I honestly did not know they were going to be using the film for advertising. I knew I had given my testimonial and told my story, but it was crazy when I found myself on a medical magazine cover and on the internet! I am not ashamed or scared to share my story, but I was a little surprised to find my story was told nationally.”
With September being Sickle Cell Awareness month, Jamison wants to make sure that other Colleton residents know how to fight the disease. “I didn’t tell my story to be famous or filmed. I told it for sickle cell awareness,” Jamison said. “I just want people to understand that sickle cell is a severe disease. It’s bad. But sickle cell patients don’t want to be pitied, we just want people to be aware that the disease is out there.
“We want to help people understand sickle cell, know what causes it, and just like cancer or diabetes, discover that awareness increases understanding.”
