Daniel and Danielle Jenkins suffer from Von Willebrand Disease (VWD), a genetic bleeding disorder that prevents blood from clotting.
But despite the disease, the 17-year old twins from Carteret have had otherwise completely normal childhood thanks to the Blood Research Institute at Saint Michael’s Medical Center in Newark, where they have been patients since they were babies.
As lifelong patients of the Blood Research Institute, they’ve learned how to deal with their disease. They are seen once a year for evaluation which includes physical exam, blood tests, and ongoing counseling and education.
Both are now seniors at Marist High School in Bayonne, where Daniella is president of her sorority and Daniel is dean of pledges. Daniel is headed to Morehouse College in the fall to study business and Daniella plans to major in political science at Spelman College, both in Atlanta.
“You can still live a pretty normal life as long as you manage it,” Danielle said. “If you can manage it, you don’t have to stop doing normal things.”
But they also understand how important it is to avoid any type of activity that could result in bleeding.
“I’ve always wanted to be a football player,” Daniel said. But he knows the gridiron is no place for someone with a bleeding disease. So, he took up tap dancing and now he’s a semi-professional tap-dancer with NJTAP. Daniella took up oratory.
Dominque Joseph, a nurse in the Blood Research Institute, said education and management is the key to living with the disease.
“We have trained them so they understand what to do in case of a bleed or an accident,” Joseph said.
The twins’ mother, Michelle Driver-Jenkins, also has VWD, but was never diagnosed as a child.
“My life was horrible growing up,” she said. “I was in constant need of blood transfusions.”
When her twins were born, she bled profusely. Had she known in advance, precautionary steps would have been taken during her pregnancy and delivery.
It wasn’t until she was 37 years old that she finally got the diagnosis. While working as a school nurse, Driver-Jenkins noted similarities of a student who had VWD to her own condition.
She came to the Blood Research Institute at Saint Michaels, one of only three designated comprehensive hemophilia treatment centers in the state.
Dr. Gunwant Guron, a hematologist/oncologist who specializes in rare blood diseases, immediately recognized the possibility of VWD. Blood tests confirmed her suspicions.
“We’re are experts in treating bleeding and clotting disorders,” Dr. Guron said. “Most hematologists don’t see that many patients with rare bleeding disorders and as a result do not recognize it when they encounter these patients. At the Blood Research Institute, we routinely manage patients with hemophilia, VWD, platelet disorders, and thrombosis. This is what we do. We are supported by state and federal grants for providing comprehensive care to these very complex patients.”
Founded in 1973, the Blood Research Institute averages more than 200 monthly visits, treating patients with bleeding and clotting disorders and other benign hematological conditions.
Services offered include: education, infusion of factor concentrates, genetic testing, social service evaluations, special coagulation testing provided by an on-site coagulation laboratory, and overall coordination of care. In addition, other services offered in BRI’s infusion center include intravenous antibiotics and blood and platelet transfusions.
“I am personally committed to taking care of this community”, Dr. Guron said, “and I am very fortunate that I have a team of staff members, including my nurses, social worker, data manager, and medical assistants who all thrive for excellence.”