Bleeding Disorders in Teenage Girls

Podcast Transcript

Speaker 3: Welcome to Little Health, a Cleveland Clinic Children's podcast that helps navigate the complexities of child health one chapter at a time.

In each session, we'll explore a specific area of pediatric care and feature a new host with specialized expertise. We'll address parental concerns, answer questions, and offer guidance on raising healthy, happy children. Now here's today's host.

Dr. Seth Rotz: Welcome back to Little Health. I'm your host, Dr. Seth Rotz, a pediatric hematologist oncologist at Cleveland Clinic Children's.

Did you know that seemingly heavy periods or easy bruising in your teenage daughter could be indicators of a more significant bleeding disorder? Today as part of our season on pediatric cancer and blood disorders, we'll discuss these often overlooked conditions in adolescent girls and what parents need to know.

Our guest today is Dr. Marium Malik, my colleague and a pediatric hematologist at Cleveland Clinic Children's. Welcome to Little Health, Dr. Malik. Can you tell us a little bit about yourself and what types of patients you see here at Cleveland Clinic?

Dr. Marium Malik: Hi. Yeah. Thank you for having me. My name is Marium Malik. I'm a pediatric hematologist with a focus in hemostasis and thrombosis. Uh, the patients that I tend to see in, uh, my clinic are young adolescent females that present with heavy menstrual bleeding.

Uh, but I also see pediatric patients in all ages presenting with, uh, prolonged bleeding symptoms like bruising, nosebleeds, bleeding after a certain procedure and so on and so forth.

Dr. Seth Rotz: So both Dr. Malik and myself are trained as pediatric hematologists and oncologists, but you know, these days a lot of us have, you know, even further subspecialization there. So Dr. Malik's, somebody I go to when I, I'm not quite sure what to do with somebody with a complicated bleeding or, or clotting disorder.

Dr. Malik, what would you say are some of the more common presentations of how patients end up in your office with concern for bleeding disorders?

Dr. Marium Malik: Yes, absolutely. So bleeding disorders to start off with are medical conditions where the blood doesn't clot properly and bleeding tends to occur over a long period of time, or you notice excessive bleeding. This is either spontaneously or after any injury or a surgical procedure.

How does it differ from normal bleeding? Is that normal bleeding occurs for a predictable period of time and healing occurs usually within a given timeframe. And patients who do tend to have bleeding disorders present with easy bruising, uh, that can occur spontaneously or with minimal trauma, frequent nosebleeds, uh, lasting, uh, 15 to 20 minutes, occurring multiple times in a week or multiple times in a month.

Excessive bleeding after getting any cut, after having any dental procedure, after any major or minor procedure. And also, uh, more importantly for young adolescent females is when they start their period to have very heavy prolonged periods.

Dr. Seth Rotz: So we're gonna get to, um, adolescent girls in just a bit here, but like in general, when you're evaluating somebody for a bleeding disorder, you know, what types of tests or what types of questions or surveys are you asking families to figure out if something suspicious or just normal?

You know, for example, if I have, um, you know, a 6-year-old who's got a bloody nose, you know, what types of things are you asking or trying to figure out to say, is that bloody nose normal for a 6-year-old? Or is there maybe something a little more suspicious here?

Dr. Marium Malik: A medical history is very important to start off with, um, along with family history, which gives us clues into, um, whether this could be a bleeding disorder versus something that is a normal bleeding that's appearing to be abnormal.

So just to take your example, if you have a 6-year-old that comes in with the nose bleeds, uh, we ask questions that are geared towards how long are these nosebleeds occurring for? Are they only happening through one nose or are they happening through both the nostrils? Are they lasting more than 10 minutes, but usually lasting more than 15 minutes?

Is it like a gush of blood coming out, like someone opened a faucet or is it slow blood trickling? Is the kid a nose picker? Uh, which is important because minimal trauma during dry months, like the winter can dry up your nasal mucosa. So even a little bit of minimal trauma while you're picking your nose can cause some bleeding.

In addition to that other bleeding symptoms in the history since birth. Is there any procedure that the 6-year-old had? Was there any prolonged bleeding after the procedure? Are there any bruising that they've noticed?

Uh, there is a validated questionnaire that a lot of hematologists use called the Pediatric Bleeding Questionnaire, and it's extrapolated from the adult bleeding questionnaire, which has been validated by the International Society of Hemostasis and Thrombosis.

Uh, the pediatric bleeding questionnaire in short known as the PBQ, gives us a list of questions that we can ask and we can score them ranging from one to three. And based on what the score of the pediatric bleeding questionnaire is, it can give us a idea of whether it is indicating an underlying bleeding disorder or not.

Dr. Seth Rotz: And then what types of tests might you order if you have somebody that you're suspicious for a bleeding disorder?

Dr. Marium Malik: Yeah, so, uh, the type of test that we normally order for somebody that has a bleeding disorder starts off with simple CBC. Um, you wanna evaluate platelets, which are the cell that helps you prevent bleeding to make sure that they're normal and they're not on the lower side. Um, you also want to check, um, for your hemoglobin, your red cells, the size of your red cell.

And that's particularly important in young adolescent females who are having heavy menstrual bleeding because if you're losing blood multiple times in a year or multiple times, um, let's say for a nosebleed, then that's going to affect your, uh,

Dr. Seth Rotz: you can become anemic.

Dr. Marium Malik: Correct.

Dr. Seth Rotz: Yeah.

Dr. Marium Malik: So, um, looking at that and then if you have signs of anemia, checking for iron, um, studies and ferritin, which gives you an idea about your iron stores can be indicative. If somebody is nutritionally appropriate and is eating a well-balanced diet, but is showing signs of anemia with the symptoms that the parents are describing as prolonged bleeding it could be secondary to a bleeding disorder.

And then to gear it towards whether this is a bleeding disorder we check, uh, uh, tests like Von Willebrand, uh, diagnostic panel, which we can talk when we talk about the disease, um, as well as, um, platelet function defects, and then checking for labs like prothrombin time and partial thrombo plasty time, which are tests that tell us if there's a specific clotting factor deficiency.

Uh, this is what we call an initial bleeding panel. There are tests that you can do beyond that if your suspicion is very high that this patient has a bleeding disorder and there are rarer disorders that you need to rule out.

Dr. Seth Rotz: Yeah. So, you know, I guess zooming in a little bit on, you know, adolescent females, what are some typical histories that you'll hear from people coming into the clinic. And what are the red flags that you hear that makes you suggest that something is, is more than just normal menstrual bleeding, that somebody has something suspicious for a bleeding disorder?

Dr. Marium Malik: So in teenage girls, oftentimes a bleeding disorder can manifest as heavy menstrual bleeding. and sometimes it doesn't come to attention till they hit puberty.

Dr. Seth Rotz: Mm-hmm. Because they haven't had a lot of bleeding issues before then.

Dr. Marium Malik: Correct. Yeah. Correct. 'Cause a lot of these bleeding disorders can be mild to moderate mucocutaneous bleeding disorders.

So they may have had symptoms which the parents didn't, or the child in itself did not think, um, were abnormal. But then the, the teenage hit puberty uh, they got their period and started noticing that the period were very, very heavy, uh, lasting more than seven days. Um, questions that can really help is how many pads, tampons or sanitary napkins an individual is, is using.

Are they doubling up? Are they using a tampon, but they still have to double up with a sanitary pad? Are they passing large clots? Are they changing their sanitary products every hour, every two hours? Are they bleeding through it onto their clothes still while doubling up? Are this soaking their bedsheets at night?

Are they having to get up in the middle of the night to change? Uh, those are some questions that you can ask that would help understand whether this is abnormal bleeding versus something that could be because of the immature HPA access.

Dr. Seth Rotz: Yeah. And you know, if, if parents are, are hearing from their, their daughters about this or noticing some of these things, you know, would you recommend that they, you know, see you first?

Should they see their pediatrician or a gynecologist? Like where do you think they should start? And then also maybe if you could talk to our audience about how sometimes you work with these other partners, um, when you do have a diagnosis?

Dr. Marium Malik: Yeah, that's a good question. So I think that it's always important to discuss these signs and symptoms with your pediatrician.

Pediatricians are very well trained in adolescent health and they can help talk to you and decipher whether this is normal bleeding or whether this is abnormal, prolonged, excessive bleeding. Um, and if they think that there is some pediatricians are comfortable sending the initial panel and then referring them over to the hematologist if they're abnormal.

Um, but I don't think. It's wrong for them to put in a referral for a hematologist if their suspicion is really high.

Dr. Seth Rotz: Sure, sure.

Dr. Marium Malik: When they come to us, we usually, uh, work them up and if we do diagnose them with a bleeding disorder, we do work with other specialists, more particularly adolescent uh, medicine physicians, which help us sort of manage hormonal therapy to help control, uh, menorrhagia, which is the medical term for heavy menstrual bleeding.

Dr. Seth Rotz: So let, let's take a step back. Let's say you have somebody that's come to you and they're noticing some of these symptoms, but you've done a pretty thorough diagnostic workup and haven't found a bleeding disorder, and we'll come back to bleeding disorders here in a second.

But what are things that can cause heavy periods or some of these symptoms in adolescent females that, that may not truly be a bleeding disorder and, and how do those end up getting managed?

Dr. Marium Malik: Yeah. Um, so I guess the most important question here is to differentiate between what is, uh, normal bleeding versus abnormal bleeding. We talked about that. But at the beginning of puberty, young as adolescent females tend to have immaturity of their HPA axis.

So HPA axis is your hypothalamic pituitary gonadal axis where the hormones are sort of immature and they're trying to get.

Dr. Seth Rotz: Trying to figure it out.

Dr. Marium Malik: Correct. They're trying to figure it out. So what usually happens in a, in a woman's menstrual cycle, or a one month period or one month menstrual cycle, is that the whole goal is, is to release an egg.

And then once the egg is released, you produce a small remnant called the corpus lutetium. The corpus lutetium is what produces the progesterone. If there is a conception, if there's an embryo, progesterone supports the endometrial lining. Usually in the first 1, 2, 2, even I've seen up to three years, the immature immaturity of the HPA axis exists, so that results in ovulatory cycle, so you're not ovulating every single month.

Dr. Seth Rotz: So there there's this hormonal signaling going on, but they're not ovulating because of that immaturity?

Dr. Marium Malik: Correct. so when you are not ovulating, you are not producing the corpus lutetium. Okay. So when you're not producing the corpus lutetium, you don't have a body that

Dr. Seth Rotz: progesterone, right?

Dr. Marium Malik: Correct. you don't have the, uh, body that secretes progesterone. So this results in unopposed estrogen and unopposed estrogen causes pretty significant endometrial perforation, but at the same time, it's perforating rapidly, but also shedding rapidly. And that shedding can cause these prolonged cycles and very heavy period.

So you can have a young girl come in and tell you, I've been bleeding for two weeks, three weeks. Mm-hmm. When they just started the period, they're about a year into that period.

Dr. Seth Rotz: And it, it might not be a bleeding disorder, it may be the immaturity of that access.

Dr. Marium Malik: Correct. It may not be. But then, um, you know what is important is that understanding that young adolescent females that present with heavy menstrual period, 20 to 30% tend to have a bleeding disorder. And out of, out of that percentage, 10 to 20% tend to have one Von Willebrand disease.

So, uh, I still go ahead and test them knowing that they have just started their period and that there could be a component of the HPA immaturity, HPA axis immaturity.

Dr. Seth Rotz: Making it worse.

Dr. Marium Malik: Making it worse. Um, or it could just be the HP axis immaturity, but the testing would help me differentiate whether I need to do any further testing.

So I do the initial panel [uhhuh]. If the labs are non-diagnostic I usually have them keep a bleed diary or a period diary if you say so, or there's another validated um, tool called the PBAC, which is the Pictorial Blood Assessment Chart.

Dr. Seth Rotz: Alright, so what is the Pictorial Blood Assessment chart?

Dr. Marium Malik: So, pictorial Blood Assessment chart is basically a way where you can show a teenage girl what heavy period is while they're looking at their sanitary pad.

Dr. Seth Rotz: Yeah. Because for somebody who hasn't been having periods for a long time, what's heavy and what's normal may not be totally clear, right?

Dr. Marium Malik: Correct correct. May not be totally clear. Some people think that, um, filling up half a pad is very heavy period, and some may think that that may not be. So sometimes for adolescent females showing them a pictorial representation of what a heavy period looks like is very helpful.

So having a conversation with them, if we think this is all immature HPA access and not really truly a bleeding disorder, I don't dismiss them. I think that they should keep a diary and come back in six months or so for assessment, because maybe at that time the hormonal balance would be a little bit better, and maybe we can get a good assessment.

But I also kind of want to add to that is that Von Willebrand, which is the most common, Von Willebrand disorder, which is the most common bleeding disorder, it tends to be a little tricky in diagnosis. Um, the levels, uh, of the Von Willbrand factor protein are affected by external factors, and one of them is estrogen.

Estrogen, a high estrogen state can cause falsely elevated levels, giving you a sense of normal panel when you really have a bleeding disorder. So if you are in an immature HPA access and you have unopposed estrogen with anovulatory phases maybe that's contributing to the fact that we're not able to diagnose.

Um, so I always leave the door open for if I don't find anything to help them manage to improve their daily activities and improve their life because it is quite frustrating to be having heavy period and then reach back out so we can retest.

Dr. Seth Rotz: So even if a. Uh, a bleeding disorder is not diagnosed, uh, at the first part. What kinds of things can you help teenage girls with to help manage these symptoms?

Dr. Marium Malik: Yes. Um, so if we don't find a bleeding disorder, uh, upon like the initial consultation. Um, and you know, we've ruled out Von Willebrand disorder. We've ruled out platelet function defect, which we can talk about as well. Um, other clotting factor deficiencies that can also present with heavy menstrual bleeding.

And it's, it's affecting their daily life. It's making them anemic. Um, their nutrition is not well, so their, their, their intake is not adequate enough to keep up with the losses. Um, we do recommend, uh, control of the heavy menstrual bleeding. Um, and the, the control is through hormonal methods.

And that's where our colleagues, uh, from adolescent medicine or peds gynecology, uh, really come, um, handy, uh, because they're the ones that can help guide the adolescent female on which, which option would they like? Yeah. Because there are many different options out there.

Dr. Seth Rotz: And those don't need to be like, forever type options.

You had kind of mentioned how the hypothalamic pituitary, HPA axis is immature and, uh, giving, uh, hormones for a couple years during that time period may be enough to get things regulated long term. Is that, is that accurate?

Dr. Marium Malik: Yes, that's absolutely accurate. And that's something that I do talk to a lot of my patients about is that sometimes it's better to make your life better and your daily activities better and have that hormonal control.

Correct your anemia. Because anemia alone can result in fatigue, missed school, um, poor performance in school, just generally feeling fatigue, not performing well. If you're someone who's interested in sports or is, is, is athletic, is to control the bleeding, make sure we repeat the iron, work that route and then come back.

And if they're ever in a place where they wanna come off of the hormonal therapy is to retest. The other, you know, alternative is you can be on hormonal therapy that doesn't have estrogen in it. So we have two types of hormonal therapy. We have estrogen, progesterone combined, and then progesterone only.

If you are on progesterone only therapy, then that does make retesting for disorders down the line a little bit more easy.

Dr. Seth Rotz: So, you know, you had mentioned Von Willebrand's disease is probably the, the most common, um, bleeding disorder you might diagnose in this population.

Can you tell, uh, listeners or maybe parents out there a little bit about what Von Willebrand disease is? Like why does it happen? Um, what are some symptoms of it? Is it something that you can live with? Is it something that's, you know, really severe or, or life changing? What is, what's that like?

Dr. Marium Malik: Yes. So Von Willebrand disorder is, uh, one of the most common mild to moderate bleeding disorders that exist in 1% of the population.

There are three different types. The most common one is type one, which is a quantity, um, issue where you are making the protein, but it just doesn't exist in the normal quantity. Um, that's why usually they're mild because, uh, in response to stress and trauma, your body has the ability to release endogenous Von Willebrand protein.

Dr. Seth Rotz: So you know, Dr. Malik, you had mentioned that Von Willebrand's disease is, um, the most common bleeding disorder that you might diagnose in this population. Can you tell the audience, or maybe patients and families, you know, what causes Von Willebrand's disease and how it's treated?

Dr. Marium Malik: Yes. Von Willebrand disease is the most common bleeding disorder that exists. Um, it's in about 1% of the general population. It can be missed in families because most time the symptoms are mild.

Type one is the most common Von Willebrand disorder, which um, is usually because of result of low Von Willebrand factor protein. It can exist in families, like I said, and can be missed because during times of stress and trauma, the body has the ability to raise these levels endogenously. Uh, so you never really go and seek attention. Now there's more and more advocacy and more and more education, so people are seeking.

Dr. Seth Rotz: Testing to correct, you know,

Dr. Marium Malik: testing,

Dr. Seth Rotz: figure out if, if this is

Dr. Marium Malik: correct.

Dr. Seth Rotz: What's at play for them.

Dr. Marium Malik: So Von Willebrand disorder, like I mentioned, there are three different types. Most common is type one, and that is because it's autosomal dominant.

Uh, you only need one parent to have it to pass it on, and it is because of low levels of Von Willebrand factor and you have bleeding symptoms because you cannot achieve the initial hemostasis because the Von Willebrand protein comes and binds to collagen where there's site of injury.

Um, it's the first protein that comes and binds to the collagen and then platelets come and bind to the Von Willebrand factor protein. So basically if you don't have enough, you don't have the platelet adhesion.

Dr. Seth Rotz: So if you, if you've cut yourself, collagen gets exposed in those blood vessels, and then platelets come and make that, that first clotter scab. But it's that Von Willebrand's factor that, uh, kind of grabs and attaches the platelet to the to the blood vessel. So, you know you're okay most of the time, but all of a sudden you've cut yourself, you might bleed longer because that Von Willebrand, you know, factor level is, is low.

Dr. Marium Malik: Is is low.

Dr. Seth Rotz: So how, how is that treated in mild cases and how is it treated? You mentioned some other types that are more severe. I, you know, the mild being, the more common ones.

Um, how, how do you treat that?

Dr. Marium Malik: Yeah, so Von Willebrand um, disorder is, uh, interesting in the way you treat it because not everybody presents with similar symptoms. There's a variability in the phenotype. You could, um, you could have just one gene, but you could be a heavy bleeder versus you could have Von Willebrand and never, never have bled in uh, your entire life.

So really it's dependent upon how, uh, much do you bleed and what impact it has on your daily activity. Now let's focus on, uh, adolescent female that has heavy menstrual bleeding. I mean, that's been her only symptom. She otherwise doesn't bruise, let's say at seven years of age she even had tonsillectomy and never bled after that. But we diagnosed her because of heavy menstrual bleeding.

So the most important management for her would be to control the uh, heavy menstrual bleeding, which can be achieved by multiple ways. One of the most used ways is hormonal therapy. And as we discussed, there are different types of hormonal therapies. We have combined, uh, uh, contraceptive pills with estrogen, progesterone only, which regulate your cycle and still have, still allow you to have a regular period.

Um, but a lot of the teenage girls don't like taking pills. So there are other options that are available, which are progesterone only, uh, which come as a depo shot. You have a Nexplanon, which is a tube that's implanted under the skin that secretes progesterone. And if you are older, 18 and 19 and above and sexually active then IUD is something that is an option to you as well.

There are certain adolescent females that do not want hormonal therapy. [Yeah]. And that's totally okay. Everybody has their choice. Um, so then we do offer them a medication called antifibrinolytics, which are tranexamic acid and aminocaproic acid known aminocartiida.

And what they do is they just reinforce your clot and shorten the amount that you bleed. So you can offer them these medications to start a day or two before their period and then continue it till their period sort of last. And from bleeding seven to eight days they may shorten it to five days and they may not bleed as heavily. And some, uh, females really do like that option because they don't want hormonal therapy now.

The other options that can be for Von Willebrand, which is the other types we didn't talk about, is the type two where you have a quality issue in your Von Willebrand protein.

When you have a quality issue, your body is producing the Von Willebrand protein, but it's just not functioning properly. And in those patients you can consider giving them the Von Willebrand concentrate, which is the protein that comes as a medication that you can give as an infusion after having conversations about coming in and getting that infusion. So that's a treatment option as well.

Dr. Seth Rotz: And those, those type two and three, which are more severe, are much more rare. Right.

Dr. Marium Malik: The type three is very rare. I've never seen one, uh, yet.

Dr. Seth Rotz: In the flesh?

Dr. Marium Malik: Yeah, in the flesh. Uh, type two, there are certain ones that are very rare. Uh, the common ones could be like type two A, two M. uh, you know, uh,

Dr. Seth Rotz: that's right. There's all the, all the letters. Yeah.

Dr. Marium Malik: Correct.

Dr. Seth Rotz: I remember that from my boards. Yeah. Yeah. Um, let's say, you know, you, you have, um, a teenager and she's come to you for irregular menstrual bleeding or heavy menstrual bleeding and you've diagnosed, you know, mild Von Willebrand's disorder.

You kind of talked about some of the options there. But, you know, does she need to be limited in her activities? Can she play, um, sports at school? Are there any things that you would counsel, um, families to be aware of once a, a diagnosis of Von Willebrand's is mean?

Dr. Marium Malik: Yeah. Yeah, that's an excellent question.

So, uh, having a bleeding disorder does not mean that they have to uh, preclude themselves from any type of activities. Um, a lot of these bleeding disorders, like I mentioned, are mild to moderate bleeding disorders. And like I said, I've never seen a type three, which is a very severe one. Obviously if you have a type three, you have more of, uh,

Dr. Seth Rotz: it's a different story.

Dr. Marium Malik: It's a different story, yeah. You have more of a joint and, you know, uh, more severe bleeds. So usually they tend to, uh, you know, I don't, uh, I don't recommend restricting anything. Obviously, if, um, they're having prolonged period in itself uh during that time, they're uncomfortable, they're not feeling the best, and then they can refrain from, you know, going to sports.

Let's say you're bleeding heavy, uh, you're a gymnast, you have to wear a tutu. It might not be the most comfortable thing. But overall there's really no restriction. They can play whatever they want as long as they're comfortable and as long as they don't have a bleeding disorder that could expose them to very severe bleeding.

Dr. Seth Rotz: Got it. And I think you had alluded to it earlier, but you know, you had touched on the idea that, you know, some of these young ladies have enough bleeding that they become iron deficient. So how do you check for that? How do you monitor that? And, and how do you replace iron if they have enough bleeding that this has occurred?

Dr. Marium Malik: Yeah, and a lot of the times, a lot of young, uh, females come to attention because the pediatrician caught iron deficiency. And then you start asking, and then, then you uncover that they've been having heavy periods for a prolonged period of time.

So the correction for iron deficiency anemia is fairly simple. Um, I am a big, big advocate for taking it orally. I think it's habit forming in young teenage females. It does not taste the best and it does cause a little bit of GI upset.

So not everybody has those adverse effects. So if they're able to take it, the treatment is fairly simple and, um, it, it's over three months. If you're taking it every single day, one pill a day, um, your body should be able to replete your iron fairly quickly.

Now, on the other hand, you have someone who has heavy menstrual bleeding and is still taking iron, but still bleeding seven to eight days per month, you're still having losses while you're still trying to replete. And if you have a patient that you're trying to replete as much as the best of your ability, but it's still uh, chronically iron deficient and then, uh, referring them to adolescent medicine to get hormonal therapy would be the, would be the treatment of choice because you do want to control that bleeding as well.

The other options for iron deficiency anemia, if you are not tolerating oral iron, is to give IV iron infusions, which is through the iv.

Dr. Seth Rotz: Are you aware of any like organizations or websites or other places where, um, families or uh, young women can go to get more information about these things or get some support or, you know, potentially talk with other people with similar challenges?

Dr. Marium Malik: Yes. Yeah, there are many excellent support groups and organizations. Uh, some of the ones that I know, um, and I really, I, particularly like myself is the Foundation for Women and Girls with Blood Disorders. Uh, they have an online website. Uh, they focus on improving care for females with blood and clotting disorders. Um, they also provide medical education and family friendly information about what periods are, what is puberty, fertility in girls with bleeding disorders.

The other one is Let's Talk Period uh, which is a Canada based, it's very useful globally. And they also have a website focused on educating young people about abnormal bleeding, period tracking apps, printable logs.

We also have the VWD Connect Foundation. It's a community built for those that have Von Willebrand disease. Um, so they have a lot of education material, webinars, downloadable like menstrual tracking tools.

And the ones that are sort of known scientifically are the National Hemophilia Foundation. And a lot of people hear about the National Hemophilia Foundation and think it's catered to the hemophilia bleeding disorder. Which is a, a more severe bleeding disorder that mainly exists in males. But it's very helpful because you could be a female that could be a hemophilia carrier, but have low clotting factor levels and could be a symptomatic carrier.

Which often happens when you have someone that is a young female, 22 is known hemophilia a carrier, and suddenly starts having really heavy period. And then, you know, you check their Factor VII levels and they're down in the twenties. That explains it.

So this actually connects people that are hemophilia carriers, but also it's open to other bleeding disorders like Von Willebrand and other rare uh, coagulation factor deficiencies. It has a Victory for Women initiative, which is focused on women and girls with bleeding disorders.

And then the other one is HFA, which is Hemophilia Federation of America. It has a blood sisterhood program, which is a peer network for women and girls, teen focused webinars. Um, so these are all very excellent ones that I refer my patients to in case they feel like they wanna connect or learn more on their own.

Dr. Seth Rotz: Sure. So for, for young women with um, mild bleeding disorders, or maybe not a mild bleeding disorder, but just heavy menses and, you know, you're talking about hormone uh, therapy for them. What's the long-term outlook for them? Is this something that tends to get better with time, worse? Are there other health issues that can come up? Is this something that's important to think about for fertility or future pregnancies?

Dr. Marium Malik: Yeah, so that's a very good question. Often comes up in clinic, what it means for them long term, and that is a question where it deters a lot of young females to go on hormonal therapy. Um, so this is where I have a conversation that it's when you are diagnosed with a bleeding disorder, unfortunately it is a lifelong um, condition that you have, but your symptoms may vary, um, in different periods of life.

Uh, you could start your, um, hormonal therapy now because your bleeding disorder is causing you to be iron deficient, but also affecting your daily activity in life. And later on when you're ready, you could come off of it and see how you're doing.

Dr. Seth Rotz: Yeah. And you, you had talked about like the maturity of the hypo thalamic pituitary access. So just because you have a mild bleeding disorder, it might be symptomatic, like early in adolescence, but over time it might get more mild.

Dr. Marium Malik: Correct. Yeah, it might get mild. Um, and then, uh, the question about fertility often comes up.

It does not affect fertility at all. A lot of females diagnosed with bleeding disorders can have healthy pregnancies, uh, healthy babies, full-term pregnancies, um, but they just have an increased risk of having bleeding during delivery.

Dr. Seth Rotz: So they need to be monitored.

Dr. Marium Malik: Correct. With excessive postpartum hemorrhages.

So usually there's a team of fetal maternal medicine, which are doctors that deal with high risk pregnancies, along with the hematologist that comes up with a plan to give you something if you go for your delivery, whether it's a C-section or a normal vaginal delivery, and what to do if you have the excessive postpartum hemorrhage.

Dr. Seth Rotz: Thank you, Dr. Malik. This has been really educational. I appreciate you joining us today. For the audience, bleeding disorders and teenage girls are more common than you think, and as parents, being informed is important. As a parent trust your instincts and don't hesitate to advocate for your daughter's health.

If you'd like to schedule an appointment with a Cleveland Clinic, children's Pediatric Hematologist Oncologist, just call 216.444.KIDS. That's 216.444.5437. Thanks so much.

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