Volunteer Story: Nicholas (sickle cell disease)

Nicholas was diagnosed with sickle cell disease soon after he was born. He suffered from hand-feet syndrome as a baby ("He cried and scooted around a lot because of pain in his hands and feet," recalls his mother, Bridget) and had his gallbladder and spleen taken out at age 5. Penicillin, hydroxyurea and other medicines have helped him and his family manage the illness and the severe pain crises that can result in hospitalization. Now 15 and an honor student in school, Nicholas enjoys "hanging out," listening to music, playing video games, wrestling and learning Brazilian jujitsu.

Nicholas participated in his first clinical trial about three years ago. It looked at the relationship between exercise and sickle cell disease.

"One of the hematologists at the hospital we go to noticed that Nicholas is an active sickle cell patient," Bridget recalls. "He's in sports, and with the hydroxyurea he's not in the hospital as much as he used to be. So they asked us if we would do a study to monitor his breathing. I asked, were there any negatives to it? And the only negative was he would be out of breath, you know. So I asked Nicholas if it was okay and he said yes. And we participated in it. Whatever can help them learn more about the disease, we're all for it."

Although the study wasn't meant to immediately improve participants' health, both mother and son were happy with their participation and the opportunity to help advance scientific knowledge about the disease.

"Participating in the studies, I think it helps the doctors figure out more about the disease and, you know, come out with more medicine and just help out everybody who has it," says Nicholas. "So their families and them won't be, you know, in pain crisis or in the hospital as much."

After the family's positive experience with the study, in 2010 Nicholas participated in a second clinical trial. This one studied lung function in teens with sickle cell disease.

"He rode on a stationary bicycle with monitors hooked on him," says Bridget. "And they wanted him to go fast and then slow down. And go fast again. And breathe into a tube. And then they drew his blood to test. There wasn't an improvement in his health, it was just to see how a person with sickle cell who's active, you know, what their lung function was like."

Similar to the first trial, the benefit of participating hasn't been for Nicholas personally but to help doctors and researchers learn more about sickle cell disease.

Nicholas says, "I hope the doctors figure out as much as they can about sickle cell, because it would just help sickle cell patients and their families, you know, not be in the hospital as much. Being able to do what they do more, having regular lives and carrying through with their regular schedules instead of having to take time off to go to the hospital and, you know, go through that whole process of pain, things like that."

Bridget and Nicholas remain open to participating in more clinical trials while considering what they are comfortable with as a family.

"I think other people should do it [participate in clinical research] as long as they don't feel there's any negative outcome," she says. "I mean, why not? If it helps to make the hematologists aware of sickle cell in a different way, I'm all for it. We're all for it. We want them to know as much as they can about sickle cell."