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Hope Charities
Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
Hope Charities
For women, the first line of defense may be with your OBGYN - Dr. Bivin Von Almen
What if the key to saving countless women's lives is understanding their monthly cycles? Join us for an eye-opening conversation on the Hope Podcast with Dr. Bivin Von Almen, an esteemed obstetrician with over 30 years of experience. From his journey through the medical landscapes of Texas and Louisiana to his impactful work at Charity Hospital, Dr. Von Almen brings invaluable insights into the often misunderstood world of women with bleeding disorders. We unpack the stark reality of these conditions, like von Willebrands disease, which often go undiagnosed, leaving many women to suffer in silence.
Imagine the anguish of undergoing unnecessary hysterectomies or enduring severe health issues simply because of a lack of awareness. Our conversation takes a deep dive into the barriers these women face, particularly in rural healthcare settings, and highlights the crucial role of family history in diagnosis. Dr. Von Almen passionately discusses the importance of education among obstetricians and the life-saving potential of pre-treatment with factor therapy. Stories of patient persistence and self-advocacy are powerful reminders of the need for informed and proactive healthcare management.
Dr. Von Almen also shares his heartfelt reasons for joining Hope and his dedication to addressing the underappreciation and mistreatment of women, especially those facing racial disparities. We explore Hope's mission to empower patients with knowledge and advocate for better healthcare outcomes. By connecting with Hope and tapping into resources at hope-charities.org, you can join this vital movement and make a difference in your health journey. Don't miss this compelling episode that educates and inspires action and change.
Welcome to the Hope Podcast. My name is Jonathan James and I'll be your host today. It is really fantastic to be here to talk about Hope Unmuted and in this podcast we're doing a series on women with bleeding disorders, and I'm really excited to invite one of my good friends and one of our board of directors, biven Von Allman. Thank you so much for being here with me today on the Hope Podcast. Very welcome, happy to be here. Yeah, it's great to see you, as always, and I should say, dr Biven Von Allman, I apologize, but you are a physician and have been practicing as an obstetrician, for I won't say you're old, but a long time 30 years, 30 plus years, yeah, and so really excited to talk about today, specifically about women with bleeding disorders and a little issues about that.
Jonathan James:But I think there's a lot of education that needs to happen and things that we're learning and we're just trying to move the needle on. How do we advance in that space, especially for women living with von Willebrand's and maybe even other bleeding disorders that just don't know that they should be looking into these things. So I'm super excited to dive into that topic, but I just want to take a few minutes for people to get to know you a little bit better, because it's just you have such an incredible background and story and so tell us a little bit about where you're from and also just kind of your journey of becoming a physician and getting involved in the practice that you're in.
Dr/ Bivin Von Almen:I was originally born in Texas and raised in five other states, ended up here in Louisiana. I went to LSU Medical School. Let's see that was many years ago, 1983 to 1988. I went through residency at Charity Hospital and all the charity hospitals from 1980. Oh sorry, 19. What years did.
Jonathan James:I say so sorry yeah 1988 to 1992.
Dr/ Bivin Von Almen:And then I started in private practice and I did obstetrics and gynecology for about 13 years and then I've been doing GYN surgery for the last 30 plus years and then retired Wow, so yeah.
Jonathan James:Well, I, you know, one of the things that I'm always inspired by is your passion and your empathy.
Jonathan James:I think a lot of times, um so often, I know, for me I've had, I have been a person that has had white coat syndrome on more than one occasion where I walk in and I just don't know. You know, I get all high blood pressure and everything else, and so sometimes that's a result of you know, sometimes you have expert physicians that are maybe don't have always the best bedside manner, but you are not that person. You're the extreme opposite of that, and we have many friends that you've helped through the years and, of course, you've helped my family as well, and and I've just, I've just always been so blown away at how much empathy and willingness to listen and really hear what the needs are. I know, when I got to know you, you were still working at a uh, a hospital that was a nonprofit hospital and, um, one of the reasons why you went there is because you just cared for people so much. You couldn't make a lot more money at a lot of other places.
Jonathan James:But you wanted to really help the people that couldn't get help any other way. And tell me a little bit about your tenure there. I know that that was a passion for you, but you worked on people that really had no insurance, they had no ability to pay, they had no, no ability. You, you really served the least of these really in many ways, right.
Dr/ Bivin Von Almen:Yes. Well, a lot of them basically fell through the cracks, either medically, socially, economically, and always had bigger problems than they really would like to admit to Just learn to deal with it from the perspective of bleeding to a point of anemia that needed to be transfused, sometimes four or five times a year, and really needed. They needed help and the whole purpose was to try to help them out. I mean, that's why we're in medicine to begin with. Right Is to help other people. It's not about us.
Jonathan James:So there's a main reason In those types of settings and I've been in some of those hospitals and they are really not easy to work in it's lack of resources, lack of staff, lack of medicine, sometimes lack of all kinds of things, and so you see, lack in every direction and to work in that environment. How many years were you there? You were 20, over 20 years. Yeah, yeah, 20 years.
Jonathan James:And so to work in that kind of environment for that long is almost like staying in a perpetual sense of residency almost in a way, I would expect, because you're just Similar. Yeah, you're just working in a space that just doesn't have all the latest, greatest technology.
Dr/ Bivin Von Almen:Bells and whistles are out there.
Jonathan James:Yeah, you don't have a coag lab that you can run down and throw into a centrifuge and get an answer right away. You have to wait for everything and that's tough a centrifuge and get an answer right away. You have to wait for everything and that's tough. But I know that you know working with specifically with women with bleeding disorders. One of the things we're learning is that we hear stories of so many people that are, you know, I mean, sort of a driving portion of that women specifically with bleeding disorders is their menstrual cycle.
Jonathan James:Is can sometimes be one of the first indications that there may be something wrong, that they didn't get detected, maybe in some other form or fashion. If you didn't have a, if you didn't have, like, a family history in a genetic sense, or you weren't aware of it because someone else had gotten diagnosed in your genetic line, you you may not have an awareness. And one of the things we talk about a lot we just, you know, have been doing some education for von Willebrand specifically. One of the things we learned about is the CDC reports. They estimate of almost nearly 3 million people in the United States could have von Willebrand's disease, but only roughly 33,000 of those people are even identified. I mean, they don't even know where the gross majority of those. So that tells me that there's a huge gap of information that hasn't been.
Jonathan James:You know of people that really need to see where these problems are, so one of the things I wanted to kind of ask you and I and I think about a lot of times as an OB is you know what is a normal menstrual cycle timeframe, cause I, I think we've seen some women that have had timeframes all over the map, and and so you know a lot of one of the first questions that comes up is do you have longer than normal?
Jonathan James:menstrual cycles yes, Well, I think most women are going like well, I don't know, I just it's my cycle you know like they don't really put that two and two together, but since that's such an important, maybe anecdotal way for the average everyday person or female to be able to kind of indicate what is a normal time.
Dr/ Bivin Von Almen:Sure, three days to seven days. Anything after seven is really considered abnormal. Okay, some women have been having cycles for 10 days and two weeks and just been putting up with it and thought that was normal. Wow yeah, anything that is in intermenstrual bleeding between cycles is abnormal and should be investigated. Anything that is heavier than they say five tablespoons, which is roughly 80 milliliters of blood in a cycle. Now, most women aren't going to measure 80 milliliters of blood, so they feel that if you're using a pad or a tampon every hour or you're having to use overprotection, that's certainly excessive bleeding. And some of those things don't get investigated from the perspective of bleeding disorders because, being an OBGYN, one of the first things we investigate is the actual organ that's bleeding the uterus. Or we investigate the hormones, or we investigate the ovaries, or we investigate the lining of the uterus. And I was just looking at a differential diagnosis for abnormal bleeding and bleeding disorders is a tenth down the line of a number of 11 or 12 in the differential diagnosis, so it's way down the line.
Jonathan James:So meaning that a doctor would probably, if there was abnormal bleeding, say, beyond that seven days or beyond that pad per hour, whatever that measurement is we're thinking about, if that's something that's outside of the norms, they would look at those other eight checkpoints before they would Correct. And you said bleeding disorders are eight or nine, Eight or nine. Down the line forms they would look at those other eight checkpoints before they would Correct. And you said bleeding disorders are eight or nine. Eight or nine?
Dr/ Bivin Von Almen:down the line.
Jonathan James:So they're going to go through a checklist in their own mind as an obstetrician to go and say, well, is it this, is it that, is it this? And they've got to basically through process of elimination, eliminate eight things before they get to a bleeding disorder, correct?
Dr/ Bivin Von Almen:Wow, right, in other words, that's one of the last things that actually gets looked at, and sometimes it's already to a point where it's it's too late for them to actually be treatable if they've already had an obstetric emergency and possibly had a postpartum hemorrhage or a surgical emergency and possibly hemorrhaged post-operatively or on the table.
Jonathan James:I had a treatment center nurse many years ago who is retired and not with us anymore. Actually, she passed away a few years ago, but she actually told me one time she said, jonathan, because if we ever had realized how many people that had extended you know, abnormal bleeding as women. What we're finding is that we had potentially thousands of them that had hysterectomies before they were of childbearing years because they had bleeding challenges. And if we would have just known that we could have given them a little bit of factor or a little bit of fungal-lipidinase protein or a little bit of treatment, a little bit of von Willebrand's protein or a little bit of treatment, they could have had a full life with all of their faculties.
Dr/ Bivin Von Almen:The education is way behind the process of treatment, which is amazing in 2024 to see the fact that we still are there.
Jonathan James:We really haven't advanced a lot.
Dr/ Bivin Von Almen:Correct, which is where knowledge is empowering to these people. Yes, because if they don't have and a lot of people a thorough history includes a family history A lot of people don't have an idea of their family history, maybe because of social situations or maybe because they were adopted. But most of the times, if we make a diagnosis and somebody has a real, strong family history, it points you right to that disorder and the need for treatment. That doesn't happen the majority of the time.
Jonathan James:Even shame, right? I mean, sometimes the limitation is that even within the family unit, it's seen as something not to talk about, so they just don't want to correct. Seen as something not to talk about, so they just don't want to correct. That's amazing, correct and so this. This is part of the reason why I know, as as a person in advocating for people with bleeding disorders, this is something that makes me really feel like man. We got to get the word out because if more people knew that anything over seven days, anything over a pad, an hour, anything like that, maybe they would start to ask questions. Because if that doctor has to go through eight different things before he's going to investigate that, but if the patient comes to you and says, hey, I'm suspicious because of these reasons as a treating physician, would that make you want to maybe look into that more?
Dr/ Bivin Von Almen:Absolutely I would. I would um rule out the number one through six things as quickly as possible and then move on if there was not an abnormality. You mentioned the word shame. Not only shame, but it's also fear, for some people Fear that they might find something way worse than just a bleeding disorder. They may not know about the bleeding disorder, they may think cancer and they may not want to come until it's to a point where they've had to receive a transfusion. I mean, if you see somebody that's been in the hospital and had to receive transfusion two, three times in a period of five, six years, that should be a red light. That should go on. Now, the other issue is that you know making the referrals to the doctors and sometimes those are pretty long waits to hematologists, oncologists, and they don't want to wait that long or they won't wait that long or maybe it's even in another city.
Jonathan James:That's really really uh, too hard for some of my patients to be able to get to, absolutely, absolutely it's very interesting I really thought about those hurdles being things that we have to, yes, consider when we're trying to encourage people to provide solutions.
Jonathan James:One of the there's so much oh my gosh, we could probably talk for hours about just rural health, because so much of what work you've done in your career has been sort of targeting, bringing resources to people in rural settings, and, and that's such a huge need.
Jonathan James:But I don't think we can underestimate how much just that travel, even even 30 minutes an hour away, much less wait times to get into a specialist all those things create hurdles. So one of the things that I think is also important is that, and one of the things I'm so grateful for you, um, getting involved with hope and being a part of our board of directors, and we'll we'll dive into some of that in a little bit too, but I I wanted to, you know, just say that one of the things I'm so grateful for is that I do believe that more education could be provided to obstetricians as a whole that are practicing in many different communities. Maybe, maybe there's a way we can continue to expand there too. But you know in in your experience, and I think about you doing so much on the surgical side were there ever times that you were doing surgery on somebody, that you had accessibility and you saw and observed concerns of maybe bleeding, that you thought, man, maybe I should look into this.
Dr/ Bivin Von Almen:And then you did look into it and found out it was von Willebrand's or it was some other kind of bleeding problem, Absolutely, there were several times I never had the ability to be able to follow up with these patients, mainly because they wouldn't come back, I mean they would not go on. I actually had a lady that came in and gave me a family history before she actually had surgery. Thank goodness, because she told stories of her mother and the scenario that happened with her in the operating room and she almost didn't make it Wow. And so we were able to give her factor before we did the surgery to help Right, and you're well aware of that. With bleeding disorders, you know a factor. I mean a lot of people think hemophilia. There's no way they're never going to have any, any operation because they don't know about the factors, they don't know about the ability to pre-treat and to be able to make it a safer environment for them to have surgery Right. And that happened a lot years ago when I was in training and right out of training.
Jonathan James:Wow, well, truly, I mean, with the way you know product and availability and all of these things, with the right information, bleeding disorders is a problem that can be resolved. It's something that can be solved, it's not something that is so. I mean, I think that there's a fear with. I mean, 30 years ago, 40 years ago, there really was such a very, not just a lack of knowledge, but there was also a lack of availability of medication to be able to address these issues. Now we thankfully in the world today, especially in first world countries, we pretty much have accessibility if we can know about these things ahead of time. And so now the biggest challenge is actually that knowledge gap. It's actually about helping people understand, and you know, especially Von Willebrand is one of those things where it's 50-50. Some are men, some are women. It's not like in hemophilia, for instance. We experienced that, as I have severe hemophilia. Historically that was considered just a male dominant disease.
Dr/ Bivin Von Almen:We're learning now that's not true either.
Jonathan James:And so so we're trying to understand and, as we're learning, I think it's important that we get this information out to so many people because, really, I think the patients in many ways are the people who might be suspicious that these are things that they might have trouble with.
Jonathan James:If, if you empower yourself with information, going to your treatment plan with your physician to say, hey, these are things I'm concerned about it could like you said, that lady that came to you ahead of time it could actually provide you the information you need to to do some investigation in that direction. And I think, as an OB, like we, we think very often in in hemophilia it's like, well, you just got to go to the treatment center and you got to go see a hematologist, but, but a lot of times the wait lists are very long. They're also very, in very specific places that can be difficult to get to, and maybe the OB is the place where you might be the most common place to discover that, especially for women. And, uh, I just think that if, if we get the message out to patients this is an area that if they, if they have the, if you're suspicious, and if you're listening to this podcast and you're thinking, man, oh my gosh, like five tablespoons, eight tablespoons of blood. Yeah, that's me every month. Maybe it's worth asking some questions, Absolutely.
Dr/ Bivin Von Almen:Absolutely. If there's any doubt, ask questions and if the questions are receptive, or if the physician is receptive to your questions, great, get him to push the ball forward. If that means a referral, if that means doing some blood tests, if they can do it, you have to try to make that available. Yeah, if they can do it, you have to try to make that available. Now, a lot of people will how should I say this If they don't know about the actual disease process, kind of stray away from it because fear that they don't know anything about it and it's not treatable for them, it's not something that they can treat. And years ago, I mean when I first was training, I mean hemophilia was. I mean basically people thought, well, that's just pretty much a death sentence. You know they're going to bleed to death if you don't, if they have a problem, and that's still I mean I hate to say this in some social areas probably still thought of as the same way Interesting yeah.
Jonathan James:Which is totally false. Absolutely, but we don't, but they know no better. Interesting, which is totally false, absolutely. But we don't, but they know no better. But they know no better, right, in medical school, I mean, you know, correct me if I'm wrong, but I understand. It's like you're going to be. A very small portion of your training is even going to explain a definition of these things, right?
Dr/ Bivin Von Almen:Right, correct, and unless you specialize specifically in hematology, hematology, oncology, you're not going to get the training in that. Because even if you do internal medicine, there's so many other things that they have to know about. I mean, they're going to know a little bit about it. They may know more about it than, say, a pediatrician, they may know more about it than a general surgeon, but realistically we don't specialize specifically in learning about that until it's something that we have to deal with.
Jonathan James:Yeah, which is hard.
Jonathan James:That's so interesting. At what point do you think somebody might need to reach out to a treatment center, would they? Would they go to their OB first and ask that question and then their OB refer them to? Should they go to the treatment center right away? What do you think is the best thing? Because if they go to somebody who's not educated on that issue, I guess my concern and what we've seen happen sometimes is sometimes that's just brushed off and kind of almost dismissed, because everybody doesn't have the luxury of being in relationship with somebody as amazing as you, that you're going to take that information to heart, you're going to investigate, you're going to you, but not every physician is like that, and so I guess the question is like, if there's a dismissal there, should they still keep pushing and maybe look for somebody in hematology, or should they wait on their obstetrician to make that? Should they go to the PCP? I don't know.
Dr/ Bivin Von Almen:You know what do you recommend? I would say that they need to get a second opinion from another if it's a primary care provider, if it's a family practitioner or if it's a hematologist. That kind of dismissed them and they never did any testing on it. If you get to that point and second or third opinions, you're not getting anywhere. If the treatment center is the place where they can get evaluated, that would be the place to go. That's what I'd recommend. I didn't even know about hemophilia treatment centers when I was trained.
Jonathan James:And you were ordering medications in some occasions for surgeries, even for these types of issues, absolutely, but you didn't even know to refer to that. No, yeah, and that's right here no education, yeah, but you didn't even know to refer to that. No, yeah, and that's right here. No education for that? That's amazing. Well, there's so much more work to do. I do feel like and I'd be curious to know your thoughts on this how important is the patient themselves, how important is their determination to find answers to getting an actual solution?
Dr/ Bivin Von Almen:Very If they continue to have the problem, it continues to be a situation that is inconveniencing them. It's very important for them to push that ball forward, so good yeah, and they may run up against egos or run up against people that don't want to do anything about it. Continue to seek out somebody who cares.
Jonathan James:That's good. I heard you say one time in one of our conferences you said you know? I said if you don't get what you need in a first opinion, get a second opinion. If you don't get a second opinion, get a third, fourth, fifth, sixth, seventh opinion.
Dr/ Bivin Von Almen:If that's what it takes, yeah.
Jonathan James:Right, I love that because it's so, and I, you know, as a person living with a bleeding sore on my end, I have been in those situations where I felt like I wasn't being heard. I felt like I wasn't being listened to. How being listened to? How does somebody stay inspired to keep? Because I feel like that there's a fine line. We talk about this a lot in advocacy is.
Jonathan James:I think that there's a fine line between being um, an activist and and and an advocate. I think that you can almost lean into when you feel like you're not being heard. You can almost lean into a place of being adversarial and that's not, that's not going to produce anything either, no, and so I think there's a fine line in that. But you know, one of the things that I've wrestled with a lot is how to inspire people to, to keep to, to stay inspired and and to keep asking questions, to stay curious. You know, right, and and you had to face that as a physician too, because you were not trained to be a hematologist, correct. So how did you stay inspired in your practice, in your career, to be able to stay, start saying let me get curious about things that I will. Maybe I wasn't trained in.
Dr/ Bivin Von Almen:Right? Well, many, many of the aspects of what the patient will come in with when it's not something specifically in our specialty. If you're not listening, if you're not paying attention, you're not going to pick it up, and I never forget that. I was told that if you listen to the patient, tell their history, they'll tell you the diagnosis. At least 90% of the time, no-transcript. We all have things going on at work. We all have things going on at home. We all have situations going on outside of work, right, and if you're not being listened to as a patient, then you need to go and find somebody that's going to listen to you and going to continue to help you along with that, trying to make the diagnosis or find out what the problem is. Yeah, if you're not satisfied, that's a good point. That's a good point. And it's hard. You can't be how should I say? They can't be very negative or pushy bitter. They just need to try to emphasize the fact that they would like to really know why they're having the problem.
Jonathan James:Stay focused on the problem, correct Nothing else.
Jonathan James:Don't get distracted by the emotions or the fear, or the shame or the which can be hard, which can be so hard If you've been dealing with it for years and especially when you're suffering, because this is not, you know, one of the things that I think is so important, and I would think anybody in the nonprofit world or you know like, even even in the work that you did within nonprofit hospitals. But your whole premise is, your whole life is really wrapped around trying to reduce unnecessary suffering and at the same time, the rigors of schedules and and all of that stuff can put a lot of stress, and the same is true for the patient.
Jonathan James:The patient a lot of times can be in a situation where they're they had to take hours off of work to even show up to an appointment and now it's going to take another 30 minutes for you to have a discussion or a conversation and sometimes, if you're not getting feedback, it can be really, really, really painful to keep that momentum. But I just want to encourage people who may be listening to this thinking oh my gosh, like I've noticed this tendency and I've noticed this problem, and I almost died in childbirth or, you know, I almost had these problems where I had a. You know, I was very depleted, almost needed a transfusion. Maybe you should ask questions. Maybe you should keep asking questions and not just be satisfied with that. Maybe you did have a family history, but there was never a label for it. Well, that's okay, Keep asking questions, because we're all constantly in a state of learning.
Jonathan James:I think sometimes people I talk to so many people out in the American public, so much, it's like well, technology is so good today and AI is so great and we have all these answers now it's like, but we still don't know everything. I mean, in so many ways it's unfathomable to think that we're in a state of you know of this universe where we can't, we really don't know all the answers, but we really don't. There's still so many things that are unknown yet right?
Dr/ Bivin Von Almen:Yes, I mean, you said 3 million people with von Willebrand.
Jonathan James:Right.
Dr/ Bivin Von Almen:Only 33,000 diagnosed Right. What percentage of those people that have it don't know Right and their family doesn't know that they have it Right. And people that are even close to the bleeding disorder community find out. Oh, after I finally started learning about bleeding disorders, somebody in my family actually had this, so their eyes are open to it and it's just not something that we pay that much attention to, and especially in the medical profession. Unless you deal specifically with the bleeding disorder community, it's not one of the top priorities on the list, like I said that differential diagnosis is way down there On metarrhagia, the heavy bleeding or the long prolonged periods.
Dr/ Bivin Von Almen:I think it's eight or nine on the differential diagnosis. On metarrhagia, the heavy periods, it's nine or 10 on the differential diagnosis out of 11 to 12 diagnoses. Almost at the bottom yes, wow.
Dr/ Bivin Von Almen:Before it's even checked off the list to look into or investigate Wow, that it's even checked off the list to look into or investigate, correct Wow. That's amazing. And there's so many things happening, whether it's postpartum hemorrhage, whether it's postpartum hemorrhage to death, whether it is intraventricular hemorrhage on a baby that's born vaginally and the mom was never diagnosed with any type of bleeding disorder, and yet the child, a male child, comes out with hemophilia. Right, that could have been prevented, right, you know post-operative hemorrhage, right, or not making her off the table from surgery.
Jonathan James:Right, I would argue that this obviously because of the gap again going back to those CDC numbers 30,000 that are diagnosed.
Dr/ Bivin Von Almen:Three million.
Jonathan James:Three million that are you 3 million that are anticipated? I think, because of that gap, it's very logical to me to assume that we have some, that there's many, I mean, according to those numbers, there's millions of people in the United States living with this problem that literally don't know, and so it's worthy of us to do this Now. For women in this case, obviously, the menstrual cycle is happening every month, and that could be an indication. But in some cases, what if you have other comorbidities, like, say, for instance, you have, uh, you're not having normal cycles at all? I mean, for instance, I have two daughters both both are you know, of the age where they're having their menstrual cycles, and they had other issues, like PCOS, that prevented them from having cycles for a period of time. And so that was the first question that was asked.
Jonathan James:Well, when they said, well, I haven't had a cycle in three months, or something like that, well, oh, well, then you don't have a bleeding disorder, which later we found out was not true, they actually both had a bleeding disorder, and so I think it's easy to talk about the cycle as being a potential problem, but you could have that same person that could be in childbirth. You brought this up and that's where it raises its ugly head, is in the middle of a trauma, correct, right, correct. And so what do you do? I mean, if the doctor's not expecting it, if the staff is not expecting it, if you're not in a hospital that knows how to look for that and you don't have enough? I mean, there's far more people at risk of this. I think that's why we have potentially millions of people that are at risk for this that just haven't heard, they just don't know.
Dr/ Bivin Von Almen:We've just talked about von Willebrand's. What about hemophilia? I mean, when I was going through residency, it's only males that have hemophilia, that have bleeding disorders. Now we know that there's females, that's right. So I mean, when you get to that point where it's an obstetric emergency or a postoperative emergency, that's when the fire drill starts, that's right. Even if the fire is put out, that doesn't mean that you shouldn't continue to work up the patient. That should be a red flag right there, right? But unfortunately that doesn't happen all the time. Right? And if the patient is in that situation, they have to continue to inquire.
Jonathan James:Yeah, the patient's got to be in the driver's seat. Absolutely, they have to be the one to put the pressure on and ask questions from every direction. It can't just be, you know, I think that there's a tendency for all of us to want to. You know, um, I know, I know. Part of the white coat syndrome, for instance, is something where you're fearful when you go into a doctor because you haven't been trained in medicine as a novice.
Jonathan James:I'm going in and I wasn't trained to be a doctor, so I don't know. There's a lot I don't know. You know, at the cellular level, I could not tell you how an enzyme interacts with a protein, ends up with a. I don't know. You know what is a gene compared to a red blood cell? I, you know what is a gene compared to a red blood cell? I, you know, sure, you know.
Jonathan James:But the point is is that we don't really, you know, while, while, while I think it's easy for us to focus and say we're not the experts, that individual person is still living with their own flesh and blood, their own body, I mean a lot longer than any researcher will be able to see that any investigator, any doctor, any treating physician, and that's not a knock on the profession. That's just to say that you may have things that you notice within your own life that raise their head at variable times, like, for instance, my daughter. One time when she was very little, she fell and she hit her lip on the stairs and it busted her lip. Well, don't you know the doggone thing like bled for like three days and we couldn't get it to stop and we even asked the question is this, possibly this?
Jonathan James:At the time, the predominant thinking was not that cause girls can't have it. But it wasn't because we weren't asking questions, but we didn't continue to keep the pressure on. And so a decade goes by, there's other problems and now she has some joint damage as a result of not asking those right questions. And I can't blame myself entirely to say that it's 100. I can't walk around with the shame of that and guilt of that. I've got to be careful to manage that emotion in my own heart. But at the same time I really can't blame the medical physicians that we're looking at at the time, either because they didn't have the information. But it's incumbent upon me as the parent or as the person living with that I've got to still keep asking questions if I see these trends, because I'm looking over decades of my own personal life and I don't think we should downplay that as a non-physician.
Dr/ Bivin Von Almen:Issue Issue Right, and you live with yourself every day. Right, the doctor sees you once every year, once every six months. Right, if it's an OBGYN, they may see them once during their pregnancy. See them once a year after then for pap smears or annual exams Right, for maybe five, ten years. Right, if it's a really long time, it could be 20. Well, by then you should have an idea. But Well, by then you should have an idea. But then you have to remember this also, jonathan the things that you've gone through with hemophilia bring a tremendous amount of pains, burdens, battles that you have to deal with, and sometimes it's hard for the patient to remain focused, to ask the right questions over and over and over again because of what's going on in their life. So that's really hard.
Jonathan James:That is hard, which is why we need organizations like Hope to help encourage, and that's one of the things I love about what we do is we, we try to do. Moments like this, we try to do educational opportunities.
Jonathan James:We try to help empower people because, at the end of the day, like it is a long, it's a lifelong road. It's not just a long road, it's a lifelong road and it's one that really does. There's lots of ebbs and flows and there's lots of things that occur over the over decades and decades of a lifetime and and very likely you're going to get tired You're going to need some encouragement that you've been such a huge, really answer to prayer for me personally as being a part of our team, because when you came onto the board of directors, we were just starting to really step out into how can we really educate people on this issue of how women are impacted and try to really make some strategic change in that area. Tell me a little bit about, like, what drew you to hope, what made you want to get involved with hope and and and. What is it that you're excited about as you look into the future, of what we could do as a, as a group and as a team?
Dr/ Bivin Von Almen:The heart of hope is really what drew me in. I'm just so humbled to be part of it, be on the board, because when I first initially was approached about it, it was like I didn't have time to do that. I was busy with other things going on in life. Then, when I realized what the heart of hope was, it's I don't have time not to do that. Y'all are here strictly for the patient. You're here to help people in crisis. You're here to help people in need. You're here to educate people.
Dr/ Bivin Von Almen:I would say at this point in time, you're probably pushing the ball forward more with women's health than any other organization that I know of. From the perspective of bleeding disorders, that's like number one in my eyes, because that's what I take care of. Women are awful, awful, a lot how should I say this? Underappreciated and not treated with the same especially racially, some women and not treated with the same respect and the same amount of interest that some other people are treated with. So I took care of an awful lot of those women and just to have them come in and feel like somebody was caring about what was going on in their life, somebody was listening, somebody wanted to help them. That's what you guys do all the time, a hundred percent. And that's what drew me in. And then, when I said, okay, I give, I'm going to be a member, I sat in here and I thought, why am I even here? Why did they even ask me? I'm not even qualified to do this. Oh my gosh.
Jonathan James:But then I realized no, I wasn't qualified.
Dr/ Bivin Von Almen:I was called to do this, wow. And as I was called to do this, then he's going to give me the qualifications that I need. That's so good, so that was the beauty of it. And then I just see the just expansion of the people that y'all are reaching. Yeah, and it's not because you want it to be about you, you want it to be about hope, you want it to be about the people. That's right. That's right.
Jonathan James:That's why we're all here is for others. That's so good. Bevan, oh my gosh, I yeah, I can't even begin to say how grateful I am for your involvement, because it it's not just a project for us. I and I think that that's what's important for people to understand is that it's not we live this number one. I mean I live it personally.
Jonathan James:You've seen so many of the people that we you know, so many of our employees, so many of the people that are involved, so many of our volunteers.
Jonathan James:I mean it's like it affects us at every, the fabric of who we are, not just resources and and expanding, you know, the possibilities of treatment and all of those things, and really, truly advocacy work for women with bleeding disorders is it's not like a trendy thing. We're trying to pick up and I think that that's something that's unless you're involved really deeply, you probably don't know that, because some of these things can feel like they're a little bit a little bit like oh, everybody's talking about, let's just talk about it. You know, and I would say that there's a lot of folks out there in the bleeding sort of community that really are doing a lot, rolling up their sleeves, committing to trying to make change, committing, trying to improve, which is so heartwarming it really is, and so, but for hope, it's not something for us that we're just trying to like, adopt as like just an extra thing that we're doing to us.
Jonathan James:This is central to what we do and, uh, we're here for the disenfranchised entirely. We're here for the people that don't. We want to meet unmet needs. We're not trying to duplicate what everybody else has done. We're not trying to just jump on a bandwagon. Even this is something for years upon years that we continue to layer upon layer as we learn. We want to pass that information along. You said earlier, knowledge is power, like that I mean truer words, right, we never spoke, I mean it's. It really can be empowering when you have the knowledge. And my hope is is that people listen to a conversation like this or they look at other resources and they think about okay, maybe, maybe I can get the courage up to ask my OB like am I maybe above average? Am I bleeding more than normal? And I hope that one day in time I will be able to look back and say, oh my gosh, now we have 2 million people that are diagnosed, not because I want to see just everybody have a bleeding disorder.
Jonathan James:It's kind of like pointing to ministry of insurance. You know, you just, you don't really necessarily wish it on anyone, but at the same time, it's like that knowledge gap has got to close, and I think it starts with the patient community. At this point, in an ideal world, I'd love for everybody in every medical school to be educated up to the hilt on these things. But you know what? There's thousands of rare diseases I talked about. You've heard me say this at a lot of our conferences, but it's like it's still amazing to me to think that there was, like what? 7,000 rare diseases diagnosed. A very good situation in the sense that we have a lot of resources that maybe other communities don't. So we hope to help with this. We hope to help with even other rare and ultra rare diseases that don't have any resources or support. But I want people to know that what we're hoping to do is really commit to this for the long haul. It's not just a project. Long haul and not just. It's not just a project.
Dr/ Bivin Von Almen:It's not just a trendy thing. It's something that's central to who we are. That's another thing about the heart of hope. It's out to help those who can't help themselves, and you're always looking for somebody else to help, which is just the amazing thing to me, which is so humbling to me.
Dr/ Bivin Von Almen:I look at y'all, especially some of the people that I know have hemophilia and are getting treatment, and I think to myself and they go on every day and continue and don't gripe about it, don't moan about it, and look at our lives, those people who aren't affected, and yet we're going to complain about something or grumble about something, and I'm thinking we have it so good compared to y'all, and y'all are just going on and on. And I think to myself, after 34 years of doing what I've done, all the possible treatments that we've had, whether it's hormones, whether it's surgery, whether it's aggressive surgery, and people are still having these problems. We're not curing them. We're not taking care of the root issue. We're just taking care of the symptoms. We need to get to the root issue, to the deeper root of what's going on, to actually take care of the patient themselves.
Dr/ Bivin Von Almen:Because, even if they've had bleeding issues and you've taken care of their bleeding problems from the perspective of some hormonal treatment, or they break through and then you've had to do surgery minor surgery, and then you've had to do major surgery. What happens after the surgery is over? Are they going to have something else going on if they truly have an underlying problem?
Jonathan James:Yes, they will.
Dr/ Bivin Von Almen:Did we really take care of the root of the problem?
Jonathan James:No, that's what we need to get to, which is why it's incumbent upon the patient population to continue to ask the questions Because, honestly, it's a point of diminishing returns. You can't expect every single doctor you encounter to be the most expert at every single thing. I don't go to my cardiologist to see how well my hemophilia is doing.
Dr/ Bivin Von Almen:There's just too much information that we all know.
Jonathan James:There's no, possibly every person, every specialist can know everything, and so, um, you know, I do think it's incumbent upon us to to educate ourselves. What to that end? What? What do you think people should do if they want to educate themselves? If they, if they're suspicious of these things being potentially probably, for instance, men that have von willebrand's disease, it's a very common symptom that they would have excessive nosebleeds. That might be seasonal. They might be seasonal, but they, they bleed more than normal from a nosebleed. Sometimes people have bleeding in their gums and their teeth. They have, they have bruising. That occurs, they just don't Unusual bruising right.
Jonathan James:It feels like it's more common than it would be maybe their friends, Right? What would you do to encourage maybe a guy or a girl who might suspect that there's something going on here that might be different? How would you encourage them to get to the education? Because I think that that's that's still a question mark out there. I mean, we're trying to do what we can with maybe online stuff, but what do?
Dr/ Bivin Von Almen:they do. Well, I mean, as we all know, the internet's right there at our fingertips. I mean people go to that all the time Search out somebody that has a problem or has the problem, or a organization that deals with those specific type of problems, and one like Hope. They're more than willing to help the patient and educate the patient and give them information and direct them in the right direction. That's right, which is another super positive thing about the heart of Hope yeah, you're always willing to help people out. Yeah, in more ways than just the ones that are in crisis, people that are inquiring. That's so true. That's what this is all about.
Jonathan James:That's so true. We were talking about this earlier about how we have a staff member here who came to work and really they came with a deep amount of professional background and all kinds of things and they got here and they started to get. They had known that some of their family members might, if they ever had to have a surgery or some kind of extreme thing happened, they might need something, and they weren't. They didn't know what it was, and then they started to learn through some of our online things and they were like wait a minute. They went back to their family members and said, what do you have again?
Jonathan James:And one of them knew and one of them didn't know. And and one of them didn't know and one of them started to. Well, it turns out she's a female that has Von Willebrands and she just had to have a double knee replacement and she's only in her late forties, early fifties and you know there's a suspicion that maybe if she had had treatment for him. Well, this employee started handing them the information he was learning and he's like, oh my gosh, like how, why didn't we know all this before?
Jonathan James:But it took him working, you know, in the environment to even realize oh my gosh like, and that's the piece that I hope to solve someday. Like I, you know, as an organization, one of the things that we've had a passion for, obviously, is serving the people that know what the problem is, but I never actually, you know, I've now been, you know, working as an employee of Hope. I mean, my wife and I started the organization 15 years ago, but as an employee, I've been here for 11 years, I think we just said and so in that timeframe, I never imagined that we would be doing campaigns and trying to reach out to maybe mass population, not just these small niche communities, and it is amazing to think about the future of what we could be doing. We need an army of people to get educated so that we can infiltrate every community. We can infiltrate every, and the internet's a good place to start. People can join an online educational session and listen in. We just did this Von Willebrand's conference. We're planning on doing that for every year going forward. But those online things you could invite a neighbor, you can invite a friend, you can invite somebody that said you know, I think maybe there's something I know about that. Well, maybe invite them. You know, I think maybe there's something I know about that. Well, maybe invite them. You know, get involved. You know we have our hope conference coming up in the fall super exciting. We have a few scholarships that people can get to travel. But even if we can't, you can access that same conference online. Maybe they can come and listen to some of those sessions to understand, to get some of the language, to get some of the learning about, maybe, what questions to bring to their doctor or their clinical setting.
Jonathan James:My daughter, my oldest daughter, actually got her first pretty educated on how this stuff works, and it was genetic. So we're looking for the same thing. We'd gone to specialists and it's probably not whatever, but nobody had really drawn blood work. Well, I was able to get my PCP, my family doctor, our primary care physician, to actually pull the blood work and they were like, yeah, sure, we'll pull it. We can't maybe diagnose it necessarily or provide treatment. We can actually look into it.
Jonathan James:Well, sure enough, there was the answer right there and she's like, oh, this is definitely what that is. So then we had information to take to the specialist and say, oh, this is what. And then it was a different story after that. But I just think that's what I'm excited about, about what you and I get to do as as part of this really movement in a way is to really bring not only bring people together to learn and grow and support each other. That's super huge. I, I, I you can never underestimate how powerful that is but also the possibilities that there's millions of people out there that need to hear about this, that are suffering, and some of them I think some of them are having early mortality. Some of them are dying as a result of this lack of knowledge.
Dr/ Bivin Von Almen:Suffering silently because they've never actually known about it.
Jonathan James:Right, and it's exciting because the needle is starting to move a little bit. We just recently got one of the medications for specifically for vulnerable brains which talked a lot about, just got an indication for preventative treatment. That's not been something that's really been on the market and so that's exciting. There's some movement there. We know that there's some new studies coming out, new therapies coming out down the line. It is really exciting to think what could be solutions in the future.
Jonathan James:But I certainly hope anybody listening to this podcast today I hope you've been inspired and energized and excited about the possibilities and what you could learn and I know we're preaching to the choir here because if you're listening to this, you obviously are already self-learning, which is great, but we want you to get involved. We're real people with an office that we take calls every day, all day, and we want to make certain that people can call us and just reach out, pick up the phone. I mean, you know, if you just call the main 800 number, you're going to get somebody that's a caring, thoughtful person that's going to want to hear your story out and listen, and we might very well have some tools that we can send you or empower you with that can help you to have some of those important conversations and so hard of hope, yeah, so true.
Jonathan James:So, biven, thank you so much for for being invested, because I know every minute that you spend away from family and your career and everything else I know is a sacrifice, and and and I just want to say thank you so much for being invested with us as a board member to help guide us down this journey, to learn how to, how to explore and expand our reach, but also thank you for taking the time today to just invest in this moment my pleasure. Thanks for having me. Well, thank you so much for listening to this podcast. I hope it was encouraging to you. You can find more resources on hope-charitiesorg and we would love, love, love for you to get involved in one of those events we talked about. But also, we're really excited about the future of what we can do together, and so we need you to get invested with what we're doing here, because there's so much more to do and we can only do it with your help. So, thanks so much for listening to this podcast. We hope to see you on the next one. Take care.
