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Von Willebrand’s disease is the most common inherited bleeding disorder

Michele Thomas has a standing appointment two days a week. But, it isn’t to get her hair or nails done or improve her backswing — it’s to get the vital infusions to keep her healthy.

While some would dread their appointments, Michele looks forward to visiting the Infusion Center at Sentara Northern Virginia Medical Center.

“Some of these ladies have been with me since day one! I don’t remember a time when they weren’t there. It’s like a home to me. I’ve spent my whole diagnosis here,” said Michele, with tears in her eyes.

These nurses and staff have been a part of Michele’s life for more than a decade. Nurses like Karen Setzer.

“Many times we see our patients over and over, and we can’t help but get attached to them in one way or another. Every patient is unique, and yet when they arrive for the first time, you can tell how vulnerable they feel. As a team, we do our best to allay their fears to help make their stay as comfortable as possible.”

Michele was diagnosed with von Willebrand disease in 2007. Her mother lived with the same condition until her death in 2006.

“Von Willebrand’s disease is the most common inherited bleeding disorder, affecting approximately 1% of the population. However, only 1% of affected individuals have medically significant bleeding problems,” explains Michele’s doctor, Hematologist, and Oncologist Geoffrey Moorer, MD. “Patients with von Willebrand’s disease have a deficiency or abnormality of von Willebrand’s factor, which is one of the many proteins our bodies make to regulate bleeding and blood clotting.”

Michele says while her grandmother was never officially diagnosed, she was always classified as a “bleeder.” Her mother was identified as having the condition when she was in her late 50’s, that’s why when Michele was diagnosed in her 40’s, she wasn’t necessarily surprised.

“At first I thought it was just the effects of coming off my blood pressure medicine,” remembers Michele. “Two days later, I still couldn’t get myself together. I had no energy. I was short of breath. Thinking the blood pressure medicine still wasn’t out of my system, I went to the Emergency Room. They took a tube of blood and came back saying I needed a blood transfusion.”

That would be the first of more than 2,500 bags of blood Michele has received, to date. After the initial shock of learning her diagnosis, Michele composed herself.

“I had a moment where I had a pity party for myself, but then I got it together, I had taken care of my mom after her diagnosis, so I knew what I had to do.”

The nurses and staff, along with Dr. Moorer, have helped guide her through the process.

“There are several types of von Willebrand’s disease and the spectrum of bleeding problems varies greatly among patients. So there is no ‘normal’ course of treatment. Patients with the most severe bleeding problems often require treatment with ‘replacement factors’ which are proteins that regulate blood clotting in the body. While patients with less severe forms of the disease may require no regular treatment at all or intermittent medications that cause their body to make more of their own blood clotting factors,” explains Dr. Moorer.

Michele is a patient that requires bi-weekly visits to Sentara’s Outpatient Infusion Center.

“I just couldn’t imagine going through this at any other place,” says Michele, “These people are like family to me!”

The Outpatient Infusion Center is just part of the expanding cancer resources at Sentara Northern Virginia Medical Center. A recent move within the hospital has reconfigured services so they’re all grouped together on the first floor, allowing easier access for patients and family members.

“The Infusion Center allows patients to receive ongoing skilled treatment while continuing with their daily activities and often allow them to continue working if need be,” says Setzer, an RN, and Oncology Certified Nurse. “We offer a multitude of services that include chemotherapy, blood transfusions, biologics, vaccines injections, iron infusions, as well as many other treatments. Our team comes from all different backgrounds, and yet, we all have the same purpose: to improve the health of every patient we treat. We are a team of respect, closeness and are always each other’s wingmen.”

It’s this attention and commitment to exemplary patient care that keeps Michele coming back to Sentara Northern Virginia Medical Center, even though she now lives in Fairfax.

“I would absolutely recommend the Infusion Center to people, my loyalty and faith belong to Sentara. It’s not just the care you get, but it’s the people also. I love all the ladies. I just couldn’t even imagine going through this at any other place.”

To learn about the Sentara Cancer Network and Outpatient Infusion Services at Sentara Northern Virginia Medical Center, call 703-523-0640 or visit Sentara.com to find the services that are right for you.

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