Laura Maynard-McGinity, M.S.W., glows when she talks about her work as the social worker on the University of Michigan Hemophilia and Coagulation Treatment Team.

“I just love this job,” Maynard-McGinity says. “You get to know the families at such a personal level—when they are diagnosed and over a long period of time.”

The University of Michigan Hemophilia and Coagulation Disorders Program is one of five treatment centers in Southeast Michigan that specializes in the diagnosis and treatment of genetic blood clotting disorders. The Comprehensive Treatment Team includes physicians, nurse clinicians, a physical therapist, a dental hygienist, and clinic coordinators.

Genetic bleeding disorders include a wide range of medical problems that cause poor blood clotting and continuous bleeding. Approximately 17,000 Americans have hemophilia. Ninety-nine percent of hemophilia patients are males, but women can carry the gene for this genetic disease.

GENERATIONS OF CARE

Maynard-McGinity has worked with three generations (both male and female) of the Ferguson-Denton family. Gil Ferguson has hemophilia, and his daughter, Amy Denton, is a carrier of the hemophilia gene. Her six-month-old son, Nolan, also has hemophilia. Amy says, “I’ve known Laura since I was a little girl. She is extremely supportive. Her passion for the job is outstanding.”

“She is wonderful,” says Nolan’s dad, Jay Denton. “When we are in the hospital, she is one of the first people to come and see us.” Amy adds, “She doesn’t look at us as patients. She looks at us as families.”

The U-M team provides services that focus on helping patients and families cope with the stresses associated with their diagnoses and treatments. Maynard-McGinity assists with a variety of physical, psychological, and social adjustments.

Parents and patients have different needs at different stages in their lives. The information the team shares with parents raising infants needs to be updated as soon as their babies are mobile. “Once the baby is active, we review with parents and caretakers all the information regarding hemophilia care,” Maynard-McGinity says. “We help parents create a plan for when they have to go to the emergency department.” The team also helps parents baby-proof their homes.

When Nolan started daycare, a member of the U-M team gave a very thorough presentation about hemophilia to the daycare center staff. Once children start school, Maynard-McGinity and the team are involved in school visits.

CREATING COMMUNITY

Maynard-McGinity also runs a monthly group for parents that the Dentons think is wonderful. “She is excellent at organizing it,” Jay says. The U-M Team also organized a “Parents Night Out” group in Midland for families from other parts of the state that is co-run by medical professionals from other centers. “It is important for families to have a sense of community and support,” Maynard-McGinity says.

Maynard-McGinity also plans special events like an annual picnic for families. Last year’s picnic had a circus/carnival theme. Some families traveled over two hours to attend. The Dentons like the picnic because it helps them connect with other families who might not be able to attend the monthly parent group. Jay says, “It brings the hemophilia community together.”

Hemophilia Facts 1 According to data collected by the Centers for Disease Control and Prevention (CDC), individuals with hemophilia who attend hemophilia treatment centers have lower mortality (lower rates of death) than those who receive care elsewhere. 2 Studies have also shown that receiving treatment at hemophilia treatment centers is associated with decreased unemployment rates; improved emotional health and family stability; increased school attendance; and a greater sense of empowerment to care for themselves at home.

FOR MORE INFORMATION services for hemophilia patients and their families, call 734-763-2506, or e-mail the team at umhtc@umich.edu.