Daniel and Danielle Jenkins (center) with Dominque Joseph (left) and Dr.
Gunwant Guron (right).
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
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
“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.”
Blood Research Institute Staff from left to right (front row) Xuan Nguyen,
Joanne Rodriguez, Dr. Gunwant Guron, Jonique Cherry, (back row) Dominique
Joseph, Georgianna Kee