Versiti Comprehensive Center for Bleeding Disorders cares for patients with bleeding disorders like hemophilia and von Willebrand disease
Bleeding disorders like hemophilia and von Willebrand disease are genetic conditions that occur when people lack a certain protein (also called a factor) in their blood that helps it to clot. Many patients with blood disorders require repeated factor infusions, which are replacements of their missing factor(s). Without proper treatment, these patients can experience bruising, severe bleeding or early death. Many turn to hemophilia treatment centers (HTCs) like Versiti Comprehensive Center for Bleeding Disorders (CCBD) for the care they need.
The CCBD provides a full spectrum of support and medical care for patients with rare and less rare bleeding and clotting disorders. “Our HTC is an integral part of the Milwaukee Regional Medical Center Campus and Versiti,” said CCBD Manager Tiffini Mueller. “This means that our patients benefit from the best of both organizations,” including Children’s Wisconsin, Froedtert Memorial Hospital and the Medical College of Wisconsin. “When medical issues arise outside of the area of expertise of CCBD physicians, we have the ability to admit and refer our patients to the leading academic medical centers,” she said.
In addition to seeing patients at the clinic, CCBD physicians also serve as clinical researchers at Versiti Blood Research Institute (BRI) and Versiti Medical Sciences Institute (MSI). Their observational research with the BRI, MSI and American Thrombosis & Hemostasis Network (ATHN) is a crucial component of disease research, as it enables them to monitor patients with bleeding disorders at other HTCs and participate in collaborative research with other investigators. “Having clinical researchers as integrated members of our CCBD treatment team means that we can offer our patients the newest treatment options for their conditions, while simultaneously using their health to drive future care,” Mueller said. “And working with basic researchers at the BRI allows us to expedite the translation of their discoveries to our patients.”
CCBD Medical Director and BRI Associate Investigator Lynn Malec, MD, MSc, said that since 2014, there has been an influx of new products to treat patients with diseases like hemophilia. “That has really given us the option to personalize patient treatment,” she said, adding that patients and their families typically opt for one of three primary treatment options:
- Implanting a venous access port (similar to an insulin pump) that allows for constant factor replacement
- Gradual factor replacement, which involves seeing patients regularly at a clinic for their factor infusions
- Non-factor therapy, wherein medication is injected under the skin by the patient or his/her family
The CCBD’s critical mass of hematologists means that they are poised to give patients the best individualized care possible and provide support like nursing and care coordination. “We are one of the strongest groups of hematologists in the country, with national and international expertise,” Dr. Malec said.
Mueller agrees. “I’m passionate about our work because we don’t just provide a diagnosis; we partner with our patients to lengthen their lifespan and maximize their quality of life,” she said. “We provide exceptional comprehensive care to our patients at the level we’d want for our own families. That’s why we consider all of CCBD—patients included—as part of our treatment center family.”
Learn more about Versiti Comprehensive Center for Bleeding Disorders