Network of Care
What are my options for managing VWD?
Von Willebrand disease (VWD) management should include comprehensive, personalized, lifelong care—beginning with diagnosis and throughout treatment.
“In 1973, the National Hemophilia Foundation launched a two-year campaign to establish a nationwide network of centers to diagnose and treat hemophilia and other bleeding disorders. The goal was to provide an extensive range of coordinated services for patients and families within a single facility.” — Hemaware.org, The National Hemophilia Foundation website17
More and more people with VWD are seeking comprehensive care at hemophilia treatment centers (HTCs), where a wide variety of blood disorders are addressed. In fact, there are now nearly as many people diagnosed with VWD as people diagnosed with hemophilia A being treated at the centers.16
Comprehensive Care Model
A comprehensive care patient is first assigned a team, which varies based on the individual’s needs and the structure of that particular HTC. Your team of healthcare providers (HCPs) typically includes hematologists, nurses, social workers, physical therapists, psychologists, and, for female patients, a gynecologist. Some may also have dentists, geneticists, and orthopedists.5,17
It’s very important in comprehensive care that the person being treated be involved in every aspect of their care. The team takes into account each individual’s needs and lifestyle when planning their treatment.17
The comprehensive care model goes beyond simply treating bleeding and focuses on prevention. The first step in preventing VWD problems is having regular check-ups. Most people living with VWD visit the center once or twice a year, or more often if bleeds are not well controlled.17 The follow-up schedule varies by the needs of the patient and the severity of their VWD.
Have a discussion with your HCP to find out if comprehensive care is right for you.
At Shire, we are committed to bringing you insights from key thought leaders in VWD who are speaking up about the challenges of VWD and how we can address them. They are here just like you to join the Beyond the Bleed movement. Join our host Erin Rein who brings you interviews with key leaders in the community and asks the tough questions you want to know.
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With thousands of patients with bleeding disorders visiting her practice, Dr. Flood knows what she’s talking about when she says VWD patient empowerment starts with education.
Dr. Roberts shares his unique perspective on VWD as both a
doctor and a patient with a bleeding disorder.
Erin: So you're bleeding, again. It happens, right? It's Von Willebrand. You know what that is. You know what to expect. But you know who doesn't know what to expect? Literally everyone else in the world, everyone who's heard of hemophilia, but thinks Von Willebrand is a German industrial metal band from the 80s.
Um, everyone who wonders what the big deal is. It's a nosebleed. That's nothing. Yeah, it's nothing until it starts to take hold in your head that you might get that nosebleed, or that heavy menstrual period, or that joint bleed, when you're doing a big presentation or when you're at—on the bus at rush hour, or when you're on a date with that someone you've been excited about, who doesn't know yet about your Von Willebrand or even that it exists or what it is.
It's that fear and that anxiety that can be worse than the bleed itself. So today in studio we're really pleased to have a special guest to talk to us about that. We have Dr. Veronica Flood. She's a hematological oncologist, and she's here to discuss the issues beyond the bleed, those fears and anxieties that can be worse than the bleed itself and make von Willebrand such a tough diagnosis.
Dr. Flood, welcome to Beyond the Bleed. Thank you for being here.
Flood: Thank so much for having me. I'm excited.
Erin: To get started, could you just give us a little of your background?
Flood: Sure. So I'm primarily a hematologist. I see patients with bleeding problems, some of whom have von Willebrand disease, some of whom have platelet problems, many of whom have various types of bleeding problems. And then I also have a practice that sees patients who have blood clots.
Erin: And how many patients do you have? Like what's the size of your practice?
Flood: So, our practice sees about 1,000 patients with Von Willebrand disease, 1,000 patients with platelet function defects, and about 1,000 patients that have bleeding symptoms but for whom we don't have a formal diagnosis.
Erin: Oh wow, so about 3,000 patients. Okay.
Flood: It's a lot of people.
Erin: What drew you to hematology initially?
Flood: I did genetics research in college, and so that's where my genetics interest came from. And then as a resident, I really got interested in the patients with bleeding problems. I actually also liked oncology, and I thought I would probably end up being an oncologist, but all my research interests and the patients I really like following are the ones with bleeding problems. So that's where I ended up.
Erin: So from your perspective, how do the bleeds themselves affect your patients?
Flood: So I think they affect it on two different levels. I mean one is the immediate impact of what's going on. So if you have a nosebleed that interrupts your ability to do whatever you're doing at work, but also if you have a bleed that takes you away from doing whatever you were supposed to be doing at that moment.
So not only do you have to stop what you're doing and take care of whatever bleeding symptoms you're having, but it prevents you from doing whatever important or whatever fun things you were doing.
Erin: People with Von Willebrand sort of, um, report lower quality of life, health-related quality of life, and that like social and emotional function is diminished. Do you see that in your patients?
Flood: Yes. So I think, again, it's the inability to do things that otherwise healthy people can do. And for the most part, we try and make sure people are able to participate in as much as possible, but sometimes there are times when you have bleeding, and you can't do what you want to be doing.
Participating in sports can be a big one, especially for the guys, but even some women, you know, are very into whatever activities they like doing. And if you have a bleed, that can prevent you from doing that. So you're dealing with the challenges of not being completely healthy, and the other challenges of not being able to do what you'd like to do on a social or a functional level.
Erin: Well, when you have patients with that challenge, or any of these challenges, what have you found are the most effective ways to empower your Von Willebrand patients?
Flood: So we try to give them as much education as possible. We try to educate them so that they can be advocates for themselves. The other important thing, honestly, is discussing treatment options with them.
Erin: So, Dr. Flood, what are you hopes for your patients, like maybe five, ten years down the road? What do you imagine for people who have Von Willebrand?
Flood: I hope that we can continue to spread awareness, first of all, about Von Willebrand disease, because I think one of the big barriers to treatment is getting people diagnosed. I think there are a number of people out there that have Von Willebrand disease and don't know it, and if we can get them diagnosed, get them to understand their disease, that will definitely help.
And then I also hope that we continue to improve on treatment options so that we can improve the day-to-day life for patients with Von Willebrand disease.
Erin: Dr. Flood, thank you so much for being here on Beyond the Bleed.
Flood: Oh, it's my pleasure. Thank you for having me.
Erin: Oh, absolutely. I know that I learned a lot. I, I'm sure our listeners learned a lot, and we really appreciate all that you had to offer. Listeners, thank you for, for checking in. Please, uh, check in again with us on beyondthebleed.com.
What's my takeaway from Dr. Flood? That what happens in a Von Willebrand patient's mind is just as important as what's happening in their blood, that anxiety cuts deeply, and that only knowledge and curiosity, and that search for understanding can help us all shed our fears and misperceptions about Von Willebrand disease. That's it for today from Beyond the Bleed. I'm Erin Rein. Stay strong and stay tuned.
Erin: So I have a friend who has Von Willebrand disease, or not. He sees, or never sees, his hematologist regularly. He sometimes takes, or never takes, medication to help stop bleeds that he may or may not have. So who is this mystery man, this Jekyll and Hyde?
The answer is he's one of millions of people who has some degree of uncontrolled bleeding, but he's never been diagnosed or treated. Everyone, that is not okay. With all the advances in healthcare, with all the moves towards personalizing medicine, millions of people with VWD are undiagnosed? Wow.
Calling in today to help us sort this out we're very honored to have Dr. Jonathan Roberts, who's a hematologist oncologist at the Bleeding and Clotting Disorders Institute. Dr. Roberts works hard every day to develop diagnostic assays and other diagnostic tools for Von Willebrand so more people can be properly evaluated and treated if, if they need it, and so people like me don't burst a blood vessel right on the air because they care too much about this issue. Dr. Roberts, welcome to Beyond the Bleed.
Roberts: Yeah, happy to be here.
Erin: Dr. Roberts, what initially drew you to hematology?
Roberts: Well, actually, I have severe hemophilia A.
Erin: Oh wow. Oh, so this is very personal to you, this work. You must feel very passionate about it.
Roberts: It's the driving force that got me into hematology, and, um, one of the motivating factors in, uh, taking care of patients, and also in the research that I do.
Erin: Wow. Yeah, I, I can imagine you offer a special insight to your patients.
Roberts: Yeah. I feel like, um, I'm not just their physician giving them, uh, treatment recommendations, but they actually feel like, to some extent, that I've walked in their shoes and that, um, we can, even if we have different bleeding symptoms, we still have, uh, kind of a common bond.
Erin: It feels like uncertainty is a big part of a Von Willebrand disease diagnosis. So do you have a lot of patients living with uncertainty, and how do you help them with that?
Roberts: You know, patients, a lot of times, come to me with uncertainty, especially when they're undiagnosed or don't have their specific subtype of Von Willebrand disease diagnosed. Um, so what I really try to do, especially on my first, and even in subsequent, uh, visits with patients, is really to, you know, get on the whiteboard and draw out the pathophysiology of Von Willebrand disease, and really give them kind of a, uh, a mental picture as to what's going on with their disorder.
And then talk in a lot of detail about the different treatment modalities that there are, because there are many things we can use to manage Von Willebrand disease and really tailor therapy specifically to what bleeding symptoms that they're having, because Von Willebrand disease is such a, uh, heterogeneous, um, disorder.
So meaning that patients can have very mild bleeding symptoms to very severe bleeding symptoms, and can have anything from really frequent nosebleeds to heavy menstrual bleeding, severe bruising. Sometimes even in more severe Von Willebrand disease they can have joint and muscle bleeds like patients with, uh, hemophilia have.
Erin: So there's so many moving parts to this. It sounds like that's a huge challenge of dealing with Von Willebrand's. Um, what do you think needs to happen to improve diagnosis?
Roberts: We are actively involved in, um, actually giving lectures to OB/GYN groups. Sometimes they're grand rounds, um, or, you know, we work closely with our ear/nose/throat, uh, colleagues, um, because patients can have, you know, diagnosis of Von Willebrand disease after a tonsillectomy, adenoidectomy, or from the nosebleeds, and then also a lot of primary care physicians that recognize like, you know, the young child or even, um, adult that has easy bruising.
Um, and so we try to let them know that we're there, we're available, and that some of these milder bleeding symptoms really should not go, um, ignored, and that they really warrant, uh, evaluation.
And so we do a lot of outreach to the community with our other colleagues, uh, in the medical field to really let them know who we are, what we do, and really that Von Willebrand disease is the most common, uh, inherited bleeding disorder, and there's lots of patients out there that are undiagnosed.
Erin: So how do you educate with such a, you know, these varying symptoms and varying treatment options? How do you educate your specific patients about their own diagnosis and treatment strategy?
Roberts: You know, I think this is another reason that patients with Von Willebrand disease should be, um, referred to hemophilia treatment centers. So, you know, at our center we have the time that we can focus on patient education.
And I make sure that with, uh, newly diagnosed patients, and even patients that have had a diagnosis for years, that we are, you know, um, drawing, uh, figures on the whiteboard, and helping them explain the—explain and understand the pathophysiology of Von Willebrand disease, so that we can really empower patients with, um, really understanding what VWD is, and the different, uh, therapeutic options that are available.
Erin: And speaking of what's available now, what do you hope for the future?
Roberts: You know, I think five, ten years down the road I, I, I hope that we are able to, um, bring more awareness of VWD, um, and really, um, help patients that are undiagnosed, with, uh, you know, mild bleeding symptoms, um, get to hemophilia treatment centers where they can, um, really receive optimal care.
Erin: Absolutely. I hope the same thing. Thank you so much for the work you do, and thank you for being here.
Roberts: It's a pleasure. Thanks for having me.
Erin: It's all my pleasure. Your perspective is very unique and very needed. Um, you're a patient, you're a clinician, and you're a researcher. So we kind of got the whole package, and I, I'm sure our listeners got everything out of it that I did. And to our listeners, please check in with us again next time on beyondthebleed.com, and have a great day.
I think Dr. Roberts gave me some hope today, more than I had when I started this podcast, that's for sure. For one thing, I know incredibly smart, dedicated people, like him, are working really hard to advance the science and art of diagnosing Von Willebrand disease. That's it for today from Beyond the Bleed. I'm Erin Rein. Stay strong and stay tuned.
Not sure what to discuss on your next HCP visit? Take this quiz to help start the conversation.*
Are you a...
Person with VWD
What is your gender?
What is the person living with VWD’s gender?
Are you newly diagnosed (within the past year) with VWD?
Is the person with VWD newly diagnosed (within the past year) with VWD?
Which of the following VWD topics are you interested in learning more about?
Heavy bleeding during menstruation or childbirth
Are you familiar with the bleeding disorders community’s comprehensive care model?
Based on your answers, these downloadable discussion guides might prove helpful on your next HCP visit.
Get the conversation started about your recent VWD diagnosis. Download the General VWD discussion guide>
Start a discussion about joint bleeds. Download the Joint Bleeds discussion guide>
Have questions about the emotional impact of VWD? Start the conversation here. Download the Emotional Concerns discussion guide>
Women have specific VWD needs. Ask the right questions. Download the Menorrhagia discussion guide>
Interested in comprehensive care at a hemophilia treatment center? Start by asking these questions. Download the Comprehensive Care at an HTC discussion guide>
*Respondent must be 18 years of age or older
Looking for a healthcare provider to help you manage your von Willebrand disease? A hemophilia treatment center is staffed with health professionals familiar with treating bleeding disorders. Find a center near you.Start here