Center Treats Children With Bleeding Disorders
Media Contact: Mary Colliver
LEXINGTON, Ky. (Mar. 19, 2010) − Nathan Hollon, age
9, does his own injections. Twice a week, he mixes up medications to
treat hemophilia, puts on a tourniquet and finds a vein.
“Then I get out my needle and I kind of stick myself,” Nathan says.
Nathan learned this independence with help from the Kentucky Children’s Hospital
Hemophilia Treatment Center, where medical professionals care for more
than 80 children like Nathan from Central and Eastern Kentucky.
The center, which was established in 1989, is one of two federally
recognized centers in Kentucky that treat patients with bleeding
disorders. The Kentucky Children's Hospital Hemophilia Treatment Center
is a comprehensive care center with a multidisciplinary medical team
led by Dr. Vlad Radulescu, Dr. Edward Romond, hematologist/oncologist,
and Susan Peterson, a nurse practitioner. The center's activities
include everything from management of day-to-day problems, to clinical
research of new blood clotting agents, to support for a summer camp
program for children with bleeding disorders.
"Patients with hemophilia or other bleeding disorders lack clotting
factors and, as a result, small injuries can mean big bleeds," said
Radulescu, center director and assistant professor of pediatrics,
University of Kentucky College of Medicine. "Some patients need regular
injections of clotting factors while others need injections only after
an injury or before a surgery." Radulescu also is a pediatric
hematologist/oncologist at Kentucky Children's Hospital.
The center helps patients manage the disease and get the medications
they need. Depending on the size of the child and the severity of the
disease, medications can cost as much as $2,000 a week.
The center, which has off-site clinics in Barbourville and in
Somerset, provides support to parents from the baby years, when it can
be hard to recognize a bleed, to the precautions necessary when the
child learns to ride a bike. Older children can attend a yearly
week-long camp, where they meet other kids like themselves. Medical
specialists at the clinic visit their patients’ schools, consult with
local doctors and are on call 24hours a day.
“Babies and very young children can’t tell their parents or
caregivers when they start to have pain in a muscle or joint which may
be an early sign of bleeding,” said Peterson. “This is especially
stressful to new parents because they know that the longer the bleeding
goes on without treatment, the more damage it can do. We help parents
make important assessments, often over the phone and in the middle of
the night; but it is all about teaching and instilling confidence in
the parents so that the child is safe.”
For Kathryn Morgan, Nathan’s mother, the support has been crucial.
When her son was a toddler, Morgan called at all hours for help. “They
feel like our family,” Morgan said. “We love them.”
Children with hemophilia attend regular school and appropriate career
counseling starts at an early age. It is important that the children
stay active and participate in physical education and exercise classes.
Proper diet and activity is stressed to avoid obesity since extra
weight just places more stress on joints and can contribute to easier
bleeding. Many children with hemophilia participate in organized sports
such as track and swim team. Contact sports are risky and discouraged.
Radulescu is enrolling patients in a research study examining the
genes involved in Noonan Syndrome, a disease named after longtime UK
pediatric cardiologist, Dr. Jacqueline Noonan. In approximately
one-third of cases, patients have bleeding problems.
“I’m trying to understand if there’s a correlation between the
genetics of the disease and the bleeding abnormality," Radulescu said.
"This may help us understand the mechanism of blood clotting in
The UK HealthCare Hemophilia Treatment Center also provides
comprehensive and specialized services to adults with bleeding
disorders. Besides Radulescu who cares for children and Romond who
cares for adults and Peterson, who cares for children and adults, there
is another nurse, a social worker and a physical therapist who are
ready to assist persons living with hemophilia.
For more information about bleeding disorders, go to National Hemophilia Foundation.