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Clearing the Confusion on ITP and Vaccines: Weighing the Risks and Understanding the Benefits
35 Plays3 months ago
In this episode of Bruised but Not Broken: Living with ITP, Dr. James Bussel, Professor Emeritus at Cornell and a leading expert in immune thrombocytopenia (ITP), joins host Barbara Pruitt for a timely and thoughtful conversation about vaccines and their relationship to ITP. From breaking down how vaccines can affect platelet counts to addressing concerns about relapses and immune response, Dr. Bussel offers science-backed guidance and reassurance for patients navigating vaccine decisions. Whether you're newly diagnosed or have lived with ITP for decades, this episode is packed with clarity, compassion, and practical advice.
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Transcript
Vaccines vs Infections: ITP Risk Analysis
00:00:00
Speaker
In general, the rate of developing ITP is much lower with vaccines than it is with the infections they're presenting. You do have a chance that your platelets may go down a little, but normally doesn't go down that much and recovers in the great majority of people within a month or just a little more.
00:00:24
Speaker
I don't think there is any one vaccine at all that should be avoided. We don't know that that would happen again with another vaccine.
00:00:43
Speaker
Welcome to the PDSA podcast, Bruised But Not Broken, Living with ITP. The diagnosis of a bleeding disorder like immune thrombocytopenia may leave you wondering, how can I really live my life with ITP?
00:00:56
Speaker
PDSA's podcast, Bruised But Not Broken, Living With ITP, brings empowering stories, the latest research and treatment updates, lifestyle tips, and answers to the real-life questions the ITP community is asking.
00:01:11
Speaker
Here's your host for this episode, Barbara Pruitt.
00:01:22
Speaker
Greetings and welcome to today's podcast. We've got a very interesting topic to go over today, and it's something that you hear quite a lot about, and it's vaccines, and vaccines particularly related to patients with ITP.
Dr. Bussell's Insights on ITP
00:01:38
Speaker
So today's guest is Dr. James Bussell, who's Professor Emeritus at Cornell University School of Medicine. Now, normally when I have a guest, I include their biography.
00:01:51
Speaker
Dr. Bussell, I hope you understand that if I went over all of your education, your research, your achievements, and your accolades, and all that you've done for the PDSA, we might not have any time for a podcast.
00:02:06
Speaker
So listeners, believe me when I say Dr. Bussell is a brilliant, kind gentleman who has dedicated his career to studying ITP.
00:02:18
Speaker
He has also served on the board the Medical Advisory Board of the PDSA, since its inception. He is generous with his support and wisdom, and we're so happy to have you here today, Dr. Boussel.
00:02:30
Speaker
Thank you very much, Barbara. That's incredibly sweet of you, even if not entirely deserved. Oh, no, it's deserved. I guarantee it's deserved. Thank you for joining us.
00:02:41
Speaker
And let me start off by asking you, what is it that inspired you to dedicate your career to studying ITP? Out of all the different things you could have done, why ITP?
00:02:53
Speaker
Part of it was fluke. was interested in hematology. And within that, I became interested in platelets. And then I got asked to give a talk on ITP. and that led to being a lifelong devotee of it.
Understanding ITP and Its Triggers
00:03:14
Speaker
I guess you found it very interesting. And it is. And how does ITP come about? I mean, if you explain to our listeners, what is it that actually happens when a person gets ITP?
00:03:26
Speaker
Well, we're not sure it's an instantaneous process, and we think it may develop for a while before it becomes obvious to somebody ah afflicted with it that they have it.
00:03:38
Speaker
But in principle, somehow your immune system, which is supposed to protect you from foreign things, suddenly doesn't recognize your platelets as foreign and says, hey, there's lots of these guys here.
00:03:54
Speaker
We have to attack them. And it attacks them. And when it does, the platelet count gets very low. And when it gets low enough, it may lead to various types of bleeding.
00:04:05
Speaker
Why exactly that happens, we're not completely sure. There's a lot of work on that. Our best examples are when it happens in association with another problem.
00:04:18
Speaker
And certainly, as I think we're going to talk a lot about, that other association could either be an infection or it could be a vaccine to prevent an infection, since that does also stimulate the immune system.
00:04:33
Speaker
Right. Well, that clarifies a lot. And when your body has an immune response, what exactly is happening when that's triggered? Right.
00:04:44
Speaker
Well, as you can imagine, Barbara, and I think you know a lot more about this than you're letting on, it's a very complex thing that occurs typically in a lot of different types of cells and organs in the body get involved.
00:05:00
Speaker
I think the simplest way to think of it for the point of view of is is that when you get exposed to something foreign and your body thinks it's foreign, even if it's not, your body makes antibodies.
00:05:14
Speaker
And the first antibody is usually IgM, as in Mary. And that is one that's kind of instantaneous, but it goes away over the course of the first week.
00:05:26
Speaker
At the same time, IgG, as in George, is then made, and it's those antibodies that really create the problem in most patients by attacking platelets and destroying them, and the body thinks, hey, those might be bacteria, and we're putting an IgG on the bacteria, and Your scavenger cells, your macrophages, we often think of them as being mainly in the spleen, gobble them up because the IgG is a marker that says, remove me.
00:06:01
Speaker
And so the scavenger cells do. They're doing their job. Yeah. That's right. Wow. Well, we know that ITP is triggered by this immune response or or It's an immune response to, like what you said, an infection, a virus, or sometimes a vaccination.
00:06:21
Speaker
Is that really common for patients to develop ITP after a vaccine? Well, let me say that that's certainly one major way that people can develop it.
00:06:34
Speaker
I think probably more often it occurs just after infections. And there are times when, which we don't understand quite as well, where it develops after other things.
00:06:46
Speaker
For example, patients whose immunity is very poor for whatever reason, a congenital problem, can make these antibodies that they're supposed to edit out for seemingly no reason at all.
00:07:00
Speaker
So I just want to be clear that this is only one way that ITP develops. It's not like this is the dominant way. Infections and then secondarily vaccines may be dominant in childhood, but not in adults.
00:07:17
Speaker
Okay. So what we think is going on is you get an infection, let's say, and your body might think a vaccine is an infection. Okay. And they make an immune response.
00:07:30
Speaker
And exactly why the platelet in that setting can be, let's call it an innocent bystander that gets, you know, clobbered while you're taking care of the infection isn't always perfectly clear to be fixed.
00:07:47
Speaker
platelets are actually part of the immune system as well as part of the stopping you from bleeding system. And they may therefore, like, sacrifice themselves to get rid of an infection.
00:08:02
Speaker
But that's an area that's never been fully clarified. Yeah, that's an interesting scenario because I've not heard that. I know from my own ITP story, it was thought that I got the ITP after a virus and I was you know four years old.
00:08:18
Speaker
For most people that I've spoken to, there are the few that have different ideas, but a lot of people think that theirs occurred after a virus of some sort. And yeah viruses are all over.
00:08:28
Speaker
um Are there any viruses that are more commonly linked to ITP, like measles or chickenpox? I would definitely want to answer that, but I just want to say there's tons of people and tons of kids who get viruses and vaccines and whatever and don't develop ITP.
00:08:50
Speaker
So I don't think we think it's a real special thing. It's something about when it hits, how it hits, and a given person that seems to trigger it. And we think people, many may be predisposed to have that reaction in some ways.
00:09:06
Speaker
Sounds like there's a lot of different factors that kind of have to fall into place in order for the ITP to really become dominant or prevalent. Or just to happen and not be a momentary blip, you know, where you have this very small drop in the platelet count and it's gone and you never even know it.
00:09:25
Speaker
One of the reasons it's been so complicated to figure that out, if it's okay for me to continue on this for a minute is genetic studies to say, oh, why do people develop ITP have been very overall unclear. There's not been a, oh, this is the ITP gene.
00:09:47
Speaker
People have identified genes in small numbers of patients, but in principle, when we try to look for causes It seems like at most it's 1% to 3% in a given population of ITP patients. So it's not very clear.
00:10:04
Speaker
1% to 3% that have a genetic tendency? that Is that what you're saying? One to 3% in a given population may have a certain gene, like might have a gene where they don't make antibodies normally, and their overall all antibodies are very decreased. okay They then go on and do it, but in another population, it'd be something else.
00:10:25
Speaker
And there seem to be many, many, many causes, and there's not one that we know of yet that's predominant. So we could say, oh In 40% of people, it's caused by X. So we're going to check you for X and find out.
00:10:41
Speaker
That's what I to say. And I appreciate your helping me get it, I hope, clearer. That's good. Going back to the ah measles or varicella, are those commonly linked to ITP specifically? Yeah.
00:10:54
Speaker
I think they've been linked in the sense that they've been better studied. And one of the things for measles and rubella as a infection that leads them to develop ITP is those viruses seem to infect the cells that make platelets, megakaryocytes, as well as typically having a problem with the immune system.
00:11:22
Speaker
So back in the late 60s and early 70s, when the first studies of live viral vaccines with measles and rubella were done, it was a relatively high incidence of ITP.
00:11:37
Speaker
But it seemed like the only reason that happened that it was high and that it even lasted a bit in a few people was that these were live vaccines and they were not really well what we call attenuated, meaning typically you take a virus and you passage it through cells repeatedly to try to make it weaker.
00:12:00
Speaker
so that it's not a really fully loaded vaccine ready to do damage. And that way it can serve as a good vaccine and make have you make antibody to it, but not go on to do all these other things, including ITP.
00:12:15
Speaker
Are all of the vaccines now, they're not live viruses? Aren't they ah all attenuated? Well, attenuated is live. It's just live weakened. Many vaccines are not live at all.
00:12:28
Speaker
And those are essentially almost always safe. And generally, the live ones, the live attenuated ones, um only make a difference if you have a very severe immune deficiency.
00:12:42
Speaker
And I know that a lot of people with ITP worry about immune deficiency. I think that there's something wrong with their immunity, but I think in reality, in the great, great majority of cases of ITP, that's not the case.
00:12:58
Speaker
Certainly, there are exceptions, but mostly that's not an issue.
Vaccination Guidelines for ITP Patients
00:13:03
Speaker
When we're talking about measles and chickenpox, but measles specifically, I know that the office, the PDSA office, has been getting a lot of questions and a lot of calls about this ah measles, mumps, rubella vaccine, the MMR, because of the measles outbreak um that's going on now.
00:13:23
Speaker
What do you have to say about this? I guess the main thing i would say, and actually PDSA, um i think this particular part of the research was led by Jen DeRamo, showed that having COVID was a lot worse for ITP, both for developing it and for having it get worse if you had it, than getting a vaccine was by far.
00:13:52
Speaker
ah So I think that in general, the rate of developing ITP is much lower with vaccines than it is with the infections they're presenting.
00:14:04
Speaker
And if you already have ITP, it appears that almost all the time, whether it's a flu shot, a COVID vaccine, or an MMR, or a varicella vaccine, a chickenpox vaccine,
00:14:20
Speaker
the you do have a chance that your platelets may go down a little, but normally doesn't go down that much and recovers in the great majority of people within a month or just a little more.
00:14:35
Speaker
They rebound. They go back to where they were. Because I know as as a patient, and I've in the past been really concerned about getting vaccinations, and there was a time like in the 70s where my doctor was like, no, let's not get a flu vaccine. Let's wait a bit.
00:14:51
Speaker
And then after a while, he said, you know, let's go ahead and try it. I got the flu vaccine, never had any problem and have been getting it ever since. and I get all the vaccines and I don't have any issue with them. What would you tell people that already have ITP that are worried about this potential drop or maybe relapsing?
00:15:15
Speaker
I was originally, the way you described it, very hesitant to give kids with ITP or even what had ITP and got better um active vaccines, especially like a second MMR or something.
00:15:31
Speaker
But the data is very strongly is just what you said. Nothing much bad happens. I think there's even a debate, and I think people feel differently about this with good reason on both sides.
00:15:46
Speaker
One school of thought would be you get a vaccine, get a platelet count, give or take, let's say, a week later to make sure you didn't get very low. The other school of thought is if you don't have symptoms, don't do anything. Don't certainly schedule your surgery a week after you had a vaccination, but don't do anything and only reach out if you have problems because in the long run, it's very, very unlikely that anything will change.
00:16:15
Speaker
Well, that's that's been my experience too. but We know how unique and special you are. So i'm I'm happy that there's data on a lot of people in addition to just you.
00:16:27
Speaker
That's right. And we need that data, which I'll talk about a little bit later. But um we're always concerned. you know I mean, patients, we're always going to be concerned about is a vaccine or is something else going to affect my ITP? Is it going to get worse? is i Am I going to relapse if I'm in remission? so I think that's just a monkey that we always have on our back.
00:16:48
Speaker
And the advice about getting you know a platelet count following ah vaccine is important. And probably having one before it, just so you do know that it was at such and such a level, and then checking it a week later to see where you are.
00:17:03
Speaker
And if it's dropped, maybe it'll go back up in another week. I think what you just said is really important, and I should have thought to say that, which is if you don't get platelet counts very often, then you should get one before you get it so you know where you're starting from. Because there certainly are people who check their count a week or whenever after, and it's lower, and they think it's the fault of the vaccine, and it may well not have been.
00:17:30
Speaker
Are there any specific vaccines that we should avoid? I mean, we've talked about a few, but there's a lot more out there. I know I travel and I've had to go to a ah specialist that does vaccines for other countries and stuff.
00:17:46
Speaker
So are there any that you know of that we should avoid? I don't think there is any one vaccine at all that should be avoided. We also don't know for sure.
00:17:58
Speaker
Let's say, let's say, Barbara, you got a flu vaccine and you discovered that your platelet count went down very low a week after, although let's say it eventually in another week or two or three got back to where it had started.
00:18:14
Speaker
We don't know that that would happen again with another vaccine. There's not much data that says it would. So I'm not even sure having had a previous reaction to do it.
00:18:26
Speaker
Other than a little more with a live vaccine live viral vaccine than one that isn't live, there's nothing that's particularly bad that I'm aware of.
00:18:37
Speaker
Well, that's interesting to know. What about patients that are on as their ITP treatment, they're on an immune suppressant. Is that something that would affect whether they get the vaccine or not, or whether it will be effective or not?
00:18:53
Speaker
I think it's not usually, again, assuming you're you talking about a killed vaccine, like the COVID vaccines, even though they were mRNA vaccines, were killed vaccines. Those were not live viruses.
00:19:09
Speaker
just want to make sure to make that point. I think the worst thing that will happen is you won't respond very well. So if you're getting the vaccine and you want to feel happy about being protected,
00:19:22
Speaker
If you're on a lot of steroids every day, if you've had rituximab within the past three to six months, if you're taking an immunosuppressive medication like azathioprine or or… Mycothenylase.
00:19:41
Speaker
ah patil Right. you may not respond as well so ideally you would try if you had a choice you would try not to be on them but generally if you're on them you're on them for a reason and you probably should just go ahead and get the vaccine anyway and hope that you get at least some protection from it, even if you don't get as much as you would have if you had not been on it.
00:20:10
Speaker
If you really, if it really, really mattered, you could, if you had the choice, change to something like a TIPO agent, thrombopoietic agent that is not thought at all really to be immunosuppressive, take that, get the vaccine while you're on that, and then you could go back to your previous medication if you wanted.
00:20:32
Speaker
But that's a lot of fuss, and that would take something really particular to make you want to do that. Right. That would take a lot of conversation with your hematologist and a lot of planning and and platelet counts and stuff, but that would be the most effective way if you were on an immunosuppressant.
00:20:50
Speaker
And if you felt you had to not only get the vaccine, but be as well protected as possible, that's almost never the case.
Importance of Vaccination Without a Spleen
00:20:59
Speaker
A sidestep question, because some of us old timers have had our spleens out and we still have ITP because we had a failed splenectomy and we have to have vaccines that regularly because we don't have a spleen. And I know one of the biggest concerns is the pneumovax, I mean the pneumonia.
00:21:20
Speaker
And we have to keep up with all those vaccines. Are there any, or should we have any concerns regarding vaccines without our spleen? If it's okay with you, I want to take one minute to just go over why the not having a spleen is a very different setting. Sure, sure. and Back to your question, if that's okay.
00:21:41
Speaker
The spleen is by far the best filter of the blood. So if anything enters your bloodstream, and your body thinks there's something wrong with it and doesn't like it, whether it's with antibodies or other things, it'll be removed most efficiently and probably mostly, if not entirely, in the spleen. There's a very unique system of blood flow that makes that happen in the spleen.
00:22:09
Speaker
If you have your spleen out and you get a bacteria in the bloodstream, you're at risk of developing a bacterial infection and getting very, very, very sick very, very, very quickly.
00:22:25
Speaker
For that reason, to try to give you some extra armor and make you less vulnerable to that, you need these other different vaccines that parenthetically are also given to people who are older, and I've had the Pneumovax for that reason,
00:22:43
Speaker
to get your level of antibodies higher so that even though you don't have the spleen, the other cells in your body can do a very efficient job taking care of these infections because these bacteria will rapidly have lots of antibody on them and that will signal the other cells in your body, hey, get rid of these guys.
00:23:07
Speaker
So that's why you need to get vaccination ideally before splenectomy. And then as Barbara was implying, it's not completely sure, but every five to seven or five to 10 years after, you should repeat it to build up the level of those antibodies.
00:23:25
Speaker
So that's what Barbara's talking about, except for possibly getting some of those in the more elderly population or frequent other settings. Those are vaccines you get. And while you might be worried about it, again, the infection is infinitely worse than what would happen ah with the vaccine. So you need to go ahead and get it. And the same would apply. You could follow your platelets a little later.
00:23:54
Speaker
you know, a week after to see if you wanted to, but generally that hasn't seemed to be a big problem. And I think that overall, when you're considering all this, you need to think of that risk benefit.
00:24:07
Speaker
Is the risk higher than the benefit? Is the benefit better than the risk? And and it seems like that's the case. The benefit outweighs the risk in most all of these.
00:24:18
Speaker
Can we talk about that for one sec before you go on? Sure. I think in life, it's a lot easier to look at a risk that you're about to have. Like, I'm going to go to the doctor tomorrow, I'm going to get a shot, and my platelets might get worse.
00:24:35
Speaker
And you're weighing that against a risk that you might get an infection at some point in the future. So if the effects of the vaccine and the infection were similar,
00:24:48
Speaker
I think you might not want to do the vaccine. But because in general, it's very clear that the infections are much worse than the vaccines, it's virtually always, if you think about it rationally, makes sense to get the vaccine and prevent the infection, even if maybe you're only going to have had, I'm making this up, a one in 10 chance to have that infection, whereas you have 100% chance you're about to get the vaccine.
00:25:17
Speaker
Right. So it makes sense to go ahead with it. Another thing that that occurred to me while we're talking is that we can get a blood test that's a titer that will show us if we have immunity to a certain thing, like if we have a measles immunity already established.
00:25:35
Speaker
And is that something that's available for most of the vaccines out there or just for a few? Yeah. I think it's almost always available for any of the common vaccines. It's certainly available for any of the ones we've mentioned.
00:25:51
Speaker
And we've mentioned, I think, at least four or five or six different ones. So I think that could be done. It's a little hard to know if that's enough, and some of them are complicated to measure. Like you brought up the pneumonia vaccine, and you'd have to measure levels of antibody to many different types of the bacteria that causes that.
00:26:15
Speaker
And then you'd have to tell yourself, well, if I have good immunity to 7 or 8 or 10, that's good enough, as opposed to I'd really like to have immunity to all 23.
00:26:27
Speaker
So that makes it a little more complicated in some cases, but you could do that if you really wanted to avoid it. Well, I know i I went back to college years ago and one of the things to be admitted was I had to get and make sure I had all my vaccinations and, you know, it wasn't as if I was 18. I think I was 50 when I went back to school, but, um,
00:26:51
Speaker
I had a titer done and it said that i did have you know protection against some of these things. So I didn't have to get revaccinated, which was fine with me. If I had to have gotten revaccinated, that would have been okay too. But it was interesting to know that my doctor said, well, let's just check and see if you already have protection against that.
00:27:12
Speaker
Yeah, that's a really good point. I think one problem with that also just to mention is if you're younger, and you get rechecked, let's say, a year, three, five, ten years after you had the vaccine, that doesn't mean in another ten years you'll still have a good titer.
00:27:31
Speaker
So sometimes even if the titer was okay, it might be worth boosting it further because some of the ways um the getting a series of vaccines or are designed, part of it is to get 95% of the people to respond instead of 80%.
00:27:51
Speaker
But some of it is to really have lifelong immunity and not have it wear off in a number of years. I know when my first grandchild was born, my daughter made a point of telling me, you need to get that whooping cough vaccination. I forget i forget what the letters were, but um I mean, it was made very, very clear to her by her obstetrician that you know anybody around this child needs to have the whooping cough vaccination. So I, Peter and I went and we got ours.
00:28:22
Speaker
But like you're saying, some things kind of wear off. I know like tetanus, you need to have that, what, every 10 years? Yeah. You know, and that's because it it decreases its effectiveness over time.
00:28:34
Speaker
Nowadays, you hear all this stuff from social, um what is it? Media. and That's it. Nowadays, we hear all this stuff from social media, good and bad about vaccinations. And You know, I can't help but think a lot of people are very conflicted. What would you say to them about the vaccinations or what kind of advice would you give them?
00:28:58
Speaker
I thought you were going to go to social media, but I guess if you're conflicted because you hear different things from different people and there's lots of opinions, I think first that could happen to anything, even much more mundane things than vaccines.
00:29:16
Speaker
So i think you have to go to a source that you trust. And generally, people who have really studied something and are able to point out facts to you, like here's a study.
00:29:32
Speaker
This happened with X number of people and this happened with Y number of people. To me, that's by far the most credible evidence. um There's a lot of things where I think people get very confused where, oh, my friend had that and then they lost all their hair or, you know, something sounds awful.
00:29:54
Speaker
And i mean, there is nothing that doesn't have at least a possibility of creating some kind of problem. But like you were saying before, Barbara, you have to look at the risk benefit and you go to credible sources to establish what that risk benefit is.
00:30:14
Speaker
And nowadays it's and pretty... accessible, those good sources you can go to and and find out more information and you Google google it or whatever your search engine is that you want to find out information on.
00:30:28
Speaker
Barbara, can I beat you to it and put in a plug for PDSA, which has a lot of really good information on the website about all of these things. And PDSA tries very hard to just put on reputable information that's well documented.
00:30:47
Speaker
Absolutely. I know that the newsletters we get and the publications that come out or things that come on, you know, in our email, all of those answers to questions that patients have, they're not just said by one doctor and our medical advisory board. do You guys look at these questions and peruse them and you know that you're giving good information. You're giving good advice um when a when a patient asks a question and that's something we're so appreciative of. ah as a patient especially, very appreciative of. You know, you can depend on the information on the website.
00:31:22
Speaker
You guys take a good look at it, and we appreciate that. Yeah, and also it's not, you know, like something I said might be a little different today than something that somebody else said, but it would likely not be substantively different. But if you were going to put something on the website or in the newsletter, there would be a number of us who would all have to get to consensus to then put it out there. So I think that's another part of the process that's very helpful.
00:31:52
Speaker
And do you have a consensus regarding vaccinations on the website? Is there a consensus from you all or your personal consensus? I think there was just a question. I don't remember exactly what it is that four of us looked at that came out in the latest newsletter.
00:32:10
Speaker
But there are not great guidelines. We all put a lot of work in when COVID started and the COVID vaccine happened, as I know you know. And there is some guidelines and consensus on that.
00:32:26
Speaker
I'm pretty sure that everybody on the Medical Advisory Board, and that's either 12 14 people, is ah people would say that in almost all cases, it's definitely better to get a vaccination than not when that's a choice. And somebody else who didn't have ITP would be getting that vaccine.
00:32:48
Speaker
And when you say 12 to 14 people, let me expand on that. It's not just 12 to 14 people, it's experts. medical doctors that are experts in ITP and studying ITP and researching ITP. It's not just not a doctor here or there. You guys are the top-notch doctors when it comes to ITP in the U.S. s And well, in the U.S., Canada, France, I mean, you guys are from all over the place. England, these great minds that are globally on our medical advisory board. So, well, I have to say this has been very interesting and I believe that it will be helpful to a lot of our listeners.
00:33:25
Speaker
And I can't thank you enough for taking the time to spend with us. And i I think that the future and our future broadcasts, I'll probably have you on as an expert for another topic.
00:33:37
Speaker
Well, thank you very much, Barbara. And i hope everybody appreciates how much you think about this and how hard you and your husband, Peter, have worked to make PDSA what it is today, which I think is incredibly helpful.
00:33:53
Speaker
Well, thank you. Hopefully we're helping the ITP community, which has been formed by this website.
PDSA's Contribution to ITP Research
00:34:01
Speaker
The PDSA has this website. Otherwise, people wouldn't have a way to connect.
00:34:06
Speaker
And um it's been very, very helpful, I think, for our community as a whole. Well, thank you again. and I look forward to seeing you soon. And now that we've covered vaccines and ITP, I want to go over another topic, the ITP registry.
00:34:24
Speaker
What is it? Well, I'm not sure if you are aware, but there hasn't been a place that collects data on ITP patients. We don't really know how many people have ITP because of the privacy and HIPAA laws here in the United States.
00:34:41
Speaker
Well, in 2017, the PDSA launched an ITP natural history registry. It is a powerful opportunity for people with ITP and their family members to contribute directly to ITP research.
00:34:58
Speaker
The data in the registry is completely confidential and it complies with the HIPAA rules and there are strict rules and protocols regarding access to this data.
00:35:11
Speaker
None of the shared data is associated with any individual. Your participation, is voluntary, and you can withdraw at any time. But your contribution on a series of surveys could help develop better therapies, establish best practices for patient care, and improve the overall quality of life for people with ITP.
00:35:37
Speaker
This is a way you can contribute directly to research. So, how do I find it? Well, you go to the PDSA website. at pdsa.org.
00:35:50
Speaker
A banner on the homepage states, Help Unlock the Mysteries of ITP. Click on it, and it will take you to the ITP Natural History Registry.
00:36:02
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There's 12 different surveys on it now. You can pick and choose which to fill out, and come back and complete the other ones later. Your participation is needed greatly, and it is So appreciated. And it is to benefit all of us with ITP.
00:36:22
Speaker
That's it for now. Thanks for listening. How do you live your life with a bleeding disorder like ITP? From working in the kitchen with knives to navigating sharp corners in your house, going out to eat in a restaurant, traveling on a plane, attending a sporting event, even dancing at a wedding.
00:36:41
Speaker
ITP patient Barbara Pruitt shares her tips and tricks for moving through life with ITP for more than 60 years. Here's her lifestyle lesson for the day.
00:36:54
Speaker
This episode about vaccines was interesting. I shared a bit about some vaccines I've had over the years. It's even more important when you don't have a spleen.
00:37:05
Speaker
I don't think about not having a spleen very often. It was taken out when I was seven years old. The only time I'm concerned is when I have a fever.
00:37:16
Speaker
My hematologists through the years have drilled it into me to go to the ER if my temp is over 101, as I could become septic, and that can be fatal.
00:37:28
Speaker
Well, a couple of months ago, I came down with a fever and ended up with pneumonia I have never had pneumonia before in my life.
00:37:39
Speaker
I was treated with antibiotics, and my doctor said it might take up to six weeks to fully get over it. I felt better immediately, and it didn't take me six weeks to recover.
00:37:52
Speaker
Just recently, i remembered that I had received the pneumonia vaccine a few years ago. And I realized that that vaccine could have saved my life.
00:38:05
Speaker
I keep my vaccine records up to date. And I get the flu shot and COVID boosters when they're available. That's my story. Well, until next time, I'm wishing you lots of healthy platelets.
00:38:21
Speaker
Thanks for listening to the PDSA podcast. Bruised but not broken. Living with ITP. made possible by our presenting sponsor, Amgen. Special thanks to Gus Majorga for composing our theme music.
00:38:38
Speaker
To see what's coming up, visit our website at pdsa.org and subscribe wherever you get your podcasts. Please share this podcast through social media with anyone who you think might benefit from the information and stories we share with the ITP and other platelet disorders community.
00:38:56
Speaker
As always, please speak with a healthcare care professional before making any treatment decisions. But know that PDSA.org is a wealth of information and resources to help you navigate life with ITP and other platelet disorders.
00:39:13
Speaker
Remember, you are not alone.