By Lori Lovely
Undiagnosed, some people go through their entire lives suffering from easy bruising, frequent or prolonged nosebleeds, prolonged bleeding with cuts or scrapes, heavy menstrual periods, or excessive bleeding during or after traumatic events, childbirth or surgeries.
Others aren’t diagnosed for years. Having mild bleeding symptoms is relatively common, so many people don’t seek medical attention until they have a serious bleeding event.
Thanks to the Bleeding & Clotting Disorders Institute (BCDI), a nonprofit organization that provides specialized care to all people with bleeding and clotting disorders, they no longer have to endure these physical difficulties without treatment.
Kollet Koulianos, Executive Director, mentions one patient who spent most of her junior and high school years in the hospital because she had Primary Immune Thrombocytopenia. “She ended up getting on one of our research trials and hasn’t been in the hospital since!”
It’s an example of the dedication at BCDI. When they arrive, patients receive state-of-the-art patient- and family-centered care from world-renowned experts. All BCDI physicians are board certified in pediatric hematology by the American Board of Pediatrics sub-board in Pediatric Hematology and Oncology.
“At BCDI we care for persons of all ages with bleeding or clotting disorders,” emphasizes Dr. Michael Tarantino, Medical Director and Founder. He lists inherited bleeding disorders such as hemophilia and von Willebrand disease, as well as acquired disorders like immune thrombocytopenia and the entire spectrum of disorders associated with excess blood clotting.
Von Willebrand disease (VWD) is the most common inherited bleeding disorder, affecting approximately 3500 people in the greater Peoria metropolitan area. Von Willebrand factor is a protein in the blood that helps blood to clot by enabling platelets to stick to the blood vessel wall at the site of an injury. People afflicted with VWD take longer to stop bleeding than normal.
“VWD is a particular research interest of mine,” points out Dr. Jonathan Roberts, Associate Medical Director. He is active in national and international clinical trials, as well as laboratory assay development to help advance knowledge and the diagnosis of this disorder.
Other disorders treated at BCDI include Hemophilia A and B. About four times as common as Hemophilia B, Hemophilia A, also known as Factor VIII Deficiency, is a genetic disorder caused by missing or defective Factor VIII, a clotting protein.
Hemophilia is very rare: only about 20,000 people in the U.S. have it, according to the U.S. Centers for Disease Control and Prevention. This is why Koulianos says it’s so important for them to seek treatment from physicians who specialize rare blood diseases.
On the other side of the spectrum are clotting disorders, an increased tendency for excessive clotting. “We treat many individuals with Deep Vein Thrombosis (DVT), Pulmonary Embolism (PE) and arterial thrombosis, and manage anticoagulation for those with and without known inherited thrombophilias (clotting disorders),” Tarantino says.
The disorder most associated with excess clotting is called Factor V Leiden. Approximately 15 million people in the U.S. are affected by it. “Having this mutation in the gene increases one’s risk of a blood clot 5-7 fold,” Tarantino explains.
The development of a blood clot is called thrombosis, which is a common medical problem. In the U.S., an estimated 2 million people experience Deep Vein Thrombosis every year. Nearly half of them experience long-term consequences that adversely affect their quality of life.
Tarantino lists symptoms of an abnormal blood clot, which typically occur in the deep veins of the arms or legs: swelling, pain or warmth of an arm or leg, unusual abdominal pain that cannot be otherwise explained.
Another blood disorder treated at BCDI is anemia, a lower-than-normal number of red blood cells or red blood cells that don’t contain enough hemoglobin.
BCDI is the only federally funded Hemophilia Treatment Center of Excellence for integrated care for persons with bleeding and clotting disorders in Illinois south of Chicago and is recognized by the Health Resources and Services Administration of the Federal Government. BCDI’s mission is to diagnose bleeding and clotting disorders in people from the central and southern Illinois region and treat them using the integrated care model.
“Everything we do is centered around that mission,” Roberts says. “Being a non-profit gives us the resources to focus on optimal care as our primary goal. Additionally, being a non-profit allows us extra time to spend with patients to discuss their particular needs and health concerns without having to focus on seeing a certain number of patients in any given clinic day. It provides infrastructure for us being leaders in national and international clinical and translational research trials to advance the field of hematology to help patients around the world.”
Operating as a non-profit allows BCDI to focus on the patients and their needs. ”Our mission is all about family-centered care for persons with bleeding and clotting disorders,” Tarantino elaborates, “not about investors expecting financial gain.”
All the physicians at BCDI are board-certified in hematology. Combined, the staff has more than 200 years of experience in the field. Tarantino is a member of the Medical and Scientific Advisory Council of the National Hemophilia Foundation. He is also a member of the Medical Advisory Board of the Platelet Disorders Support Association, a national advocacy group for persons with chronic platelet disorders.
The BCDI staff strives to stay on the cutting edge of diagnostics, using a state-of-the-art diagnostic laboratory to test for nearly all the known bleeding and clotting disorders. ”We are involved in specialty coagulation testing and novel, cutting-edge research laboratory investigative research platforms,” says Roberts, who recently received a major research grant to validate a new, rapid testing method for von Willebrand Disease that he developed during his fellowship training at the Blood Center of Wisconsin.
“The physicians and staff at the BCDI don’t just read the medical literature,” Tarantino says, “they write it.” Contributions to the medical literature over the past five years include more than 50 peer-reviewed published manuscripts and abstracts.
“We have research studies going on all the time,” Koulianos adds, counting 15 current trials. “We are very much about cutting-edge research and finding better treatments and therapies for our patients.”
This cutting-edge integrated care approach sets them apart from other clinics. “We care for the whole person with services that go beyond our internationally recognized expertise in hematology, including social services, dental screenings, nutritional counseling, women’s health services and physical therapy services…” Tarantino lists.
Using an integrated care model means that BCDI has a treatment team that includes physicians, nurse practitioners, nurse coordinators, a nutritionist, a social services coordinator, physical therapists, dentists and pharmacy staff. Teamwork supports a proactive approach, allowing better management of the patient’s care.
That teamwork extends beyond their staff. As Koulianos points out, their outreach nurse team educates EMTs, ER staff, teachers and other caretakers in schools, and at educational conferences throughout the state of Illinois about how to treat a patient with a bleeding or clotting disorder in a medical emergency. BCDI also has a bilingual Spanish-speaking Nurse Outreach Educator to increase outreach within the Hispanic community.
A congenital or chronic disease such as a bleeding disorder not only affects the patient, but their family, too. Required lifestyle changes may affect the patient’s loved ones. “We take care of individuals holistically and assist them in many aspects of their lives, including things like college scholarships for those with inherited bleeding disorders,” Roberts adds. It’s an example of the compassionate, patient-centered care BCDI provides.
For more information, contact the Bleeding & Clotting Disorders Institute located at 9128 N. Lindbergh Drive, Peoria. They may be reached at 309-692-5337, ilbcdi.org,email@example.com, or facebook.com/ILBCDI. Office Hours: Monday-Friday 7:30am-4:30pm.
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