For the fourth time this year, Taryn McNamee, 21, sits calmly under crisp white sheets while nurses and doctors buzz around her, taking heart rate measurements and monitoring her. To her left, a morphine drip provides much needed comfort and relief.

“It kind of feels like someone ripped your arm off,” McNamee said. “You have to sit there and endure excruciating pain. [Sickle cell disease is] really tough.”

Sickle cell disease is when red blood cells are crescent or sickle-shaped, which decreases the amount of oxygen the body receives. According to U.S. News, one in every 500 African Americans and one in 1,200 Hispanic Americans have the disease.

People with sickle cell anemia are generally advised not to do sports and recommended to keep stress levels low. 

Diamond Ray Edmundson, 26, is the co-founder of No Pain In the Playroom, a sickle cell awareness organization. He said that those who choose to participate in physically demanding activities should closely monitor their health and know their limits.

McNamee, however, is a full-time dancer and choreographer. Ignoring all prior advice from her doctors, she is committed to being a dancer and a choreographer regardless of the consequences.

“Dance is the only thing that’s been a constant in my whole life… it's the only thing I fall back on,” McNamee said. “My family hasn't really been there for me and my friends didn't come until later. It’s the one thing that I do to express myself whenever I’m happy and whenever I’m sad.”

Those with sickle cell disease experience painful “episodes” on select parts of their body that can last for hours or even days. Many patients who have these episodes are hospitalized to make sure the disease does not affect other parts of the body.

McNamee had her first episode when she was eight years old. From then on, she usually visited the hospital about once every six months. 

“Sometimes I can feel an episode coming on,” McNamee said. “Then I’ll usually stop what I’m doing and just relax for a little. I’m prescribed Vicodin to help with my mini-episodes, but when that becomes not enough, then I have to go to the emergency room and be hospitalized.”

The harshest blow to McNamee, however, was when her dance team decided she could not be a coordinator for the team because of her condition.

“I was in shock,” McNamee said. “They clearly knew that I was a really good dancer and that I had the appropriate organizational skills, but they didn’t want the ‘sick girl’ even though they barely knew anything about sickle cell. It really hurt a lot and I was really disappointed.”

Despite the fact that her condition is hereditary and that she has had it all her life, McNamee said her parents are still in denial.

“When I’m in the hospital, my mom will call me and say, ‘Taryn, why are you in the hospital? Are you dehydrated from not drinking enough water?’ and half the time I’m just astonished that she still can’t accept that her daughter has sickle cell,” McNamee said. “It’s like, ‘Mom, you and Dad gave this to me,’ but I guess she just hasn’t come to terms with it yet.”

Not only has her family been unsupportive, but she has also received little support from her friends.

“When I tell people that I have sickle cell, a lot of them start treating me differently, like I’m made of porcelain or something and that I can’t take care of myself,” McNamee said. “Some of them have even stopped being friends with me because they didn’t know how to deal with it.”

Edmundson said that education the disease is key for people close to the patient to understand his or her condition. Since sickle cell anemia is a recessive disease, meaning it is only expressed when both the father and mother have the trait, many adults may unknowingly be carriers.

“Sickle cell drastically changes your outlook on how you would continue on with your life,” Edmundson said. “If you have a child who has sickle cell and you didn’t know about it, it can turn your world upside down. People who carry the sickle cell trait need to be aware that they could bring a child into the world with sickle cell disease.”

Despite the lack of support from her family and friends, McNamee said that sickle cell has made her a stronger person.

“You learn a lot about life when you have a disease like sickle cell. It puts things into perspective,” McNamee said. “You learn who your true friends are and who you can trust.”

No Pain in the Playroom not only provides education, but it also has support groups for people like McNamee who deal with sickle cell anemia. To raise money for the organization, No Pain in the Playroom holds benefit concerts and also has a clothing line.

“Our organization is here for the people,” said Omeka Edwards, co-founder of No Pain in the Playroom. “They can come here and get support and feel like they’re not the only one who is dealing with it.”

McNamee said that she tried to hide her disease in the past, but now she is being more “up front” about it. 

“It’s a part of who I am and I shouldn’t hide that,” McNamee said. “People need to know more people with sickle cell and know that it’s not something that’s contagious or strange, but a part of everyday life for us.”