Man stages winning battle against disease Sayreville resident recognized for refusal to let sickle cell rule life BY JESSICA SMITH Staff Writer Joe Tsogbe, of Sayreville, is pictured at the recent banquet sponsored by the Institute for Children with Cancer and Blood Disorders, New Brunswick. Tsogbe, who came to the United States from Togo, Africa, in 2003, has been fighting sickle cell disease since birth. SAYREVILLE - Though he has spent more time in the hospital than he can keep track of, and is far from his home and family, 20-year-old Joe Tsogbe does not let his illness hold him back. Tsogbe, a borough resident and student at Middlesex County College, was born with sickle cell disease, a lifelong illness. "I've been sick a lot, but it's OK," Tsogbe said. "I've been hospitalized a lot this year. I really never like to give up." Tsogbe and eight other young sickle cell patients who have persevered were honored May 10 at a ceremony hosted by the New Brunswick-based Institute for Children with Cancer and Blood Disorders. The honorees were recognized for having graduated from high school and continuing to move toward their goals despite the major setbacks involved in having a chronic illness. "It feels very good," Tsogbe said. "It makes you realize how much stuff you actually went through. People tend to give up easily in life. It gives you an opportunity to be proud of yourself, build up your confidence." Tsogbe came to the United States from Togo, Africa, in 2003, in order to receive better treatment for his illness. Though he had to leave his mother, Sylvia, and sister, Joie-Helene, 18, behind, Tsogbe did what he felt he had to do to improve the quality of his life. "I always try to do what I can … because I don't want to let my mom down," Tsogbe said. "She's the reason that keeps me going … she never gave up on me, so I decided not to give up on her." Though he keeps in close contact with his family, Tsogbe has not been able to visit them since he came to the U.S., and said he is not sure when he will be able to see them again. His brother, Erick, who is in his 30s, lives in Maryland, so they are able to visit on occasion, Tsogbe said. Living with his third set of foster parents in Sayreville, Tsogbe said they are the best ones he has had. Dealing with various moves while managing his illness and attending school was stressful for Tsogbe, but not so much as to have deterred him from reaching his goals. "He seems to have done a very good job of adjusting," Dr. Richard Drachtman, professor of pediatrics at Robert Wood Johnson Medical School, said of Tsogbe. "I think the biggest challenge is the lack of family around for guidance. I think that certainly adds to the challenge of having a chronic illness." During the few years Tsogbe has been here, he and the staff at the institute have gotten to know each other. Tutors and other staff members have helped him through the difficult process of keeping up with his school work throughout his frequent stays at the hospital. "He's a very driven individual," Drachtman said. "When he wants something, he gets it. He finds a way." On the night of his graduation from Sayreville War Memorial High School last year, while his peers went off to celebrate, Tsogbe was admitted to the hospital for a hip replacement the following day. He said the surgery has helped him to be able to walk without the pain he once suffered. Tsogbe said some of the symptoms related to sickle cell disease are joint pain, breathing problems and a high risk of heart attack and stroke. According to Drachtman, the most common acute problem for sickle cell patients is referred to as a pain crisis. While the crises can sometimes be dealt with at home, sickle cell patients often have to be admitted to the hospital to receive intravenous pain medication. "It's a life-threatening and very debilitating illness," Drachtman said. The disease, which threatens the vital organs, once took the lives of 80 percent of its sufferers by the age of 20, Drachtman said. In the past 15 to 20 years, however, medical treatments have allowed for longer and better lives for those with the illness. "We've made significant strides over the last decade or so," Drachtman said. According to Drachtman, the approach to treatment is now more proactive, with infant screenings and preventive medicine. "We also teach patients to manage their disease, and not let the disease manage them," Drachtman said. "It can be very difficult sometimes, but on the other hand, sometimes very gratifying." Along with nurse practitioner Beth Savage, Drachtman presented the honorees at the ceremony with awards for their achievements. Speakers at the event offered information on colleges and trade schools, as well as counseling and insurance. "They were feeling great about it," Drachtman said. "I think they were pretty surprised themselves about how far they got." Though Tsogbe has come a long way, he still has big dreams ahead of him. After he graduates from Middlesex County College, Tsogbe plans to transfer to the New Jersey Institute of Technology, Newark, to pursue a career in biomedical engineering. "Maybe one day I'll make something to help sickle cell patients," Tsogbe said. "We've got to try to find something to help them. I wouldn't like anyone to give up on their life just because they have the sickness, or problems in life. In life, you have to have dreams that you want to accomplish." While working toward his own dreams, Tsogbe said he is enjoying college life. He spends time with friends and enjoys dancing, but his favorite way to spend his time is with his girlfriend, Rebecca. The two have been together for nearly a year. "She's really helpful," Tsogbe said. "She's the one other person who really keeps me going. She's always good - she's by my side and supportive."