Michael Barden

The real aha moment came the day before I was diagnosed. I was shaving, getting ready for work, and I nicked myself, something I've done many, many times before. But this time it was different. That little tiny cut would not stop bleeding. We were shocked, especially when the doctor told us the SFPD was on its way to ensure that we went to the emergency room because my platelet level was at 3,000. Going into this, I had no idea what ITP was. I didn't even know it existed. And to suddenly have it and wonder what the heck it is that I have and to find a resource like PDSA and learn about other people who have it, it was so important to me.

Narrator

   

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? 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. Here’s your host for this episode, Barbara Pruitt.

Barbara Pruitt

Welcome, and thank you for joining me today. Something I find that's so interesting is talking to other patients. I always tend to learn something. We usually find something similar in our journeys, and then there are differences. Well, today's guest is an ITP patient whose journey took an unexpected turn.

Before we dive in, I want to briefly explain a condition you may not have heard of, Evans syndrome. Evans syndrome is a rare autoimmune condition where the immune system mistakenly attacks more than one type of blood cell. For some people, that means low platelets, like an ITP, but it can also mean low red blood cells or low white blood cells. In some cases, destruction of these blood cells occurs at the same time. However, in most cases, one condition develops first before the other condition develops later on. With that in mind, let me welcome Michael Barden.

Michael Barden

First of all, thanks for having me and thank you for the kind introduction.

Barbara Pruitt

Well, thank you for sharing your journey with us today. I know I have read your very interesting biography and you were diagnosed with ITP not terribly long ago. I guess that was November of 2023.

Michael Barden

That's right.

Barbara Pruitt

Now, before your diagnosis, you had some months of some subtle symptoms. What was going on then?

Michael Barden

I had several warnings that something was wrong. Roughly six months before being diagnosed, my calves and ankles itch like crazy. I saw a few purple dots and figured I had a rash. I asked my wife to change laundry detergent because I thought it might be caused by an allergic reaction to chemicals in my socks.

Nope, it wasn't the detergent.

Barbara Pruitt

No, it was petechiae.

Michael Barden

About. Yes, that's exactly what it was.

Barbara Pruitt

You learn that later, I'm sure. And what else, what other kind of symptoms did you experience?

Michael Barden

Well, about six months before being diagnosed, I visited my dentist for my normal, regular cleaning. And my debt my dentist said to me, your teeth and gums look great, but I sure wish I could explain the bleeding. You know, I just brushed that off. He sees people's gums probably bleeding all the time. And I thought, well, okay. And he didn't he didn't he didn't take it any further.

Barbara Pruitt

Okay. And did you have bruising also?

Michael Barden

No, not at that time. No, no bruising.

Barbara Pruitt

Okay. okay

Michael Barden

But at that point, I was still itching in my calves and ankles. And now I have a comment about bleeding in my gum. So, you know, there were signs.

Barbara Pruitt

Right, right. And I know that you experienced an aha moment. What was that?

Michael Barden

Well, let's see, my wife and I went to the desert for a few days and almost immediately after arriving, my nose started to bleed. Not real heavy bleeding, just a slow drip. I attributed to the desert air and carried a handkerchief with me. I didn't think much of it. My nose continued to bleed, however, until we got home. Then it stopped. Again, proof that it was indeed the dry desert air, right?

Barbara Pruitt

You would think so, right?

Michael Barden

Wrong. But the real aha moment came the day before I was diagnosed. I was shaving, getting ready for work, and I nicked myself, something I've done many, many times before. But this time it was different. That little tiny cut would not stop bleeding. And combined with the comments from my dentist, the bloody nose I had had, and some blood in the urine that I experienced as well, This was my aha moment.

Barbara Pruitt

Right. You started putting those puzzle pieces together and worrying that something might be going on because prior to this, I mean, tell me if I'm wrong, you were a healthy man working full time for various high tech companies in Silicon Valley.

Michael Barden

Yes. That's right. That's right.

Barbara Pruitt

And I'm sure this was a shock to you.

Michael Barden

Yeah, it was. That cut was so small. And I had never bled like I was bleeding from such a small cut before. And it seemed significant to me. So, I emailed my doctor and told him I thought I had a clotting issue. He immediately ordered a CBC. And instead of going straight to work that morning, I went to get a blood draw.

Barbara Pruitt

Right. And then then what happened? Did you get that call, that emergency call?

Michael Barden

Well, we were watching TV that evening and our phones blew up. I mean, we had so many messages and text messages, voice messages. You just couldn't believe it. So, we were shocked, especially when the doctor told us the SFPD was on its way to ensure that we went to the emergency room because my plate level was at 3,000.

Barbara Pruitt

Oh, gosh. Now, SFPD is the San Francisco Police Department, right?

Michael Barden

That's right that's right so we didn't know what was going on but we thought it was no small matter because the police were now involved so we rushed around the house gathering things that i might need for the hospital and oh we told the doctor please not send the police to our home we're on our way

Barbara Pruitt

Right, right. Okay, okay.

Michael Barden

So, I drove across town, something I now know I should not have done. The emergency department was waiting for me, and I was quickly admitted for further testing.

Barbara Pruitt

Wow.

Michael Barden

It took nearly 50 vials of blood from me, and I was transferred out of the ED to a hospital room to spend the night. At this point, I know nothing about ITV, nothing at all.

Barbara Pruitt

Wow, and you went from... diagnosis. I mean, you got the diagnosis there in the hospital, correct? Was it the following day or how long did that take?

Michael Barden

That's right. It was the next morning. They ran all those tests on all those almost 50 vials during the during the night. And then the next morning, what seemed like the entire oncology hematology staff gathered in my room. I mean, we're kind of scared right now because, you know, they got oncology on their smocks, you know. So, one doctor spoke and he and he gave me their consensus diagnosis after doing all the testing. And that was I had immune thrombocytopenia, and the date was November 15, 2023.

Barbara Pruitt

Very important date for you to remember, I'm sure.

Michael Barden

Yeah.

Barbara Pruitt

Yeah, your life changed a lot, I'm sure.

Michael Barden

Absolutely. Yeah. Who would have guessed?

Barbara Pruitt

I know. have a question. The hospital you were in is it a teaching hospital? Yes.

Michael Barden

I'm not sure. I don't know if it is or not.

Barbara Pruitt

Okay, because I know that you know when doctors are training other doctors or fellows, you will have this herd of doctors coming in to see you. And 50 vials of blood is quite extensive, and sometimes a lot of those go to research. That's what I was wondering.

Michael Barden

David Malkin, Well that's interesting to know, and I think you were right about it being a training hospital now that you mentioned that fellows were involved, because there were a couple doctors in there that were fellows that I looked up after I got out of the hospital, so yes, I would say it is a teaching hospital.

Barbara Pruitt

Right. Well, that that explains a lot of that. Now, in February the next year, which was 2024, ended up in the hospital for 21 days. What happened then? Mm-hmm for twenty one days what happened then

Michael Barden

I had received some treatment called WinRho, and the result was not good for me. I had totally I was totally breathless with a racing heart, even after the simplest of activities. you know Getting dressed, I couldn't I barely could get dressed, or even walking 10 feet. In addition, I had a near constant headache and I was extremely fatigued and dizzy. So my doctor felt I was allergic to WinRho and ordered that I stop receiving it. My symptoms, however, didn't really go away even when I stopped with the WinRho. They remained and, in fact, worsened. I developed nonstop bleeding from my gums, accompanied with mouth blisters. My stool was dark black and I had bruises on my arms and my legs and petechia on my legs. I went to the hospital and was admitted with a platelet count of less than two. At the time, a nurse told me that less than two is hospital speak for zero. I had zero platelets. And my hemoglobin at the time was just under six.

Barbara Pruitt

Wow. And that's really low.

Michael Barden

So, I started steroids for four days. I was given IVIG for a couple days. I was given a whole blood and platelets and we waited for my body to respond as it had during my previous hospital visits. But in this case, on this visit, nothing happened. My platelets remained at less than two k It was clear that what had worked in the past, basically steroids plus IVIG, was not going to work this time. They put me on end plate. I had three injections of that. I started rituximab. I had two infusions of that. Nothing happened. My body seemed broken, and I was quickly losing hope. I thought I was going to spend who knows how long in the hospital. I didn't see any. end to what was happening to me. Then the gastrointestinal team visited me. I had four doctors in my room for this one. They wanted to do an endoscopy and look for signs of internal bleeding, but they couldn't because of my low platelets. The endoscopy would have to wait, but now I had more waiting and worrying now about internal bleeding.

Barbara Pruitt

Right. Right.

Michael Barden

They put an alarm on my bed. I couldn't get up without, you know, having an nurse come in to assist me. But finally, finally, finally, things changed. I had it after all that they did for me. And who's to say what really worked? Because I was just a ah big lab experiment at that point. Finally, things changed. I had a platelet count of three. This was after 18 days in a row of less than two.

Barbara Pruitt

Oh my goodness.

Michael Barden

The next day I was at 16 on my discharge. I was at 140.

Barbara Pruitt

Wow.

Michael Barden

I had spent 21 days in the hospital.

Barbara Pruitt

Gosh, that's a long time to be in the hospital as a patient.

Michael Barden

Oh, I ate every meal they had to offer.

Barbara Pruitt

Oh gosh. Now, now going through this affects not just you, but your family. And I know you're married and you have two adult daughters. How are they handling all of this?

Michael Barden

Well, obviously, they were very, very concerned about me and my wife was my great Internet researcher, she was. Looking up and feeding me all the information she could find on ITP so I was becoming knowledgeable in the hospital and the greatest source of that was PDSA. She found that link and told me almost immediately after my after those doctors gathered in my room and told me I had ITP she was on the case and I was consuming information about what it means to have ITP what the what caused it, what may cure it, what the treatments are, etc. So, I was very thankful for that. And my family gathered. Neither of my daughters live in San Francisco. They came from LA and Austin, Texas to visit me and they were of great comfort to me because they I got pretty dark after all those days of having no progress at all in my platelets count. So, I thank them for that.

Barbara Pruitt

Right. Right. Well, that was back in February of 2024. So, following that, you ended up with a platelet count that pretty much was stable for a year, correct?

Michael Barden

Yes. Well, I went through another treatment. Upon my discharge from this 21-day stay in the hospital, I was switched to biweekly injections of end plate, which definitely worked for me. And the only issue I had was controlling how well it worked. My platelet count was out of control. and went from 964,000, that's almost a million, to five, that's almost a million to five in two weeks and then back 536 the next week at this point I was getting pretty frustrated and I sought second and third opinions; both hematologists agreed that I indeed had ITP which was a basic question I wanted them to answer for me they both agreed and they both recommended I consider taking l-trombopag specifically Alveas. So, I stopped the Nplate and began taking Alveas in May of 2024. And it worked very well for me. Fast forward one year, Alveas kept my plate levels in the normal range. My hemoglobin remained below normal, but not terribly so. That is until April 2025.

Barbara Pruitt

And then that ended up in another hospital stay, correct?

Michael Barden

That's right, I became increasingly out of breath, fatigued and dizzy. My urine was dark, my heart was racing, I had a mouthful of blisters.

Barbara Pruitt

Oh, boy.

Michael Barden

So, I went in for my CBC and my hemoglobin and red blood cell counts had crashed. I was again told to go to the hospital as soon as possible.

Barbara Pruitt

Oh gosh. I'm sure you were worried this was another round of what you had previously experienced.

Michael Barden

Yeah, in some ways it was quite similar in a way, you know, other than the things they told me. But the treatment, well, I was given multiple blood transfusions and I was put on a heavy dose of steroids. Again, they collected a lot of blood from me for analysis. And in the morning, they again gathered in my room. and told me that I had autoimmune hemolytic anemia, you know, AHA for short. Together with the ITP I already had, they told me I had Evans syndrome. So something else, I wouldn't say entirely out of the blue because in the course of my ed ITP research, I had run across Evans Syndrome and I was aware that something like this existed. And I had a sneaking suspicion for a while that I may have it too, even before they told me.

Barbara Pruitt

Well, let me ask you when you were able to get that second diagnosis of Evans syndrome, was it in some ways a relief because at least you knew what it was?

Michael Barden

Yes, it was. it was. But honestly, I was not surprised. By this time in my journey, I had consumed a lot of content regarding ITP. And I had read, as I mentioned, several descriptions of Evans syndrome. I felt it matched my symptoms. I was COMDS positive. I had a lower than normal hemoglobin, red blood cells and hematocrit. I was often out of breath. So, like you say, I was a bit relieved that maybe because we understood better what was wrong with we with me, we could fix it. I guess I would say now, how wrong can a person be?

Barbara Pruitt

Yeah. Well, you know, the shortness of breath, the dizziness can be caused by a lot of things and ah oftentimes in regards to your heart function. But as you found out with the Evans syndrome, the low red blood cells, red low hemoglobin and hematocrit, that's what carries the oxygen in your body. And if you're not getting enough oxygen circulating in your body, you're going to feel lightheaded. You're going to have that dizziness and then the palpitations and et cetera, et cetera. So it's amazing how much you can find out on the PDSA website as well as other places that online, things that are at your fingertips.

Michael Barden

Well, five months later, we went to Austin to visit my daughter. And beginning on the first day of that trip in the airport, I began to feel out of breath again. I wasn't too worried because the trip was only for a few days and if I needed treatment, I could get it when I returned to San Francisco. Yeah, we had a great first day, but I felt my symptoms getting worse. And on the second day of the trip, my breathlessness was increasing rapidly. I knew my hemoglobin was crashing, but I still thought I would be okay. We had a nice lunch poolside at the hotel. Then I decided to leave the hotel and begin our activities. I got up from my chair and I quickly collapsed and blacked out for a few seconds. My wife called 911, the paramedics arrived and I was taken to a hospital in Austin.

Barbara Pruitt

Wow. Not the way to start a vacation.

Michael Barden

No, not at all. and My family was there with me. They saw me collapse. And that different thing for me suddenly ITP were not just numbers and like ITP can be just numbers in a report, but to see you know your father collapse poolside and go unconscious that must have been very trying for them. Spent six days in the intensive care unit at the hospital, I was in in Austin. My hemoglobin upon arrival at this hospital was 4.6.

Barbara Pruitt

Oh, that's horribly low. Horribly

Michael Barden

But because there were problems matching my blood type and antibodies, I was delayed getting my first transfusion. By that time, my hemoglobin had dropped to 3.6, which is considered dangerously low.

Barbara Pruitt

Oh, gosh. Yeah. I'm surprised you were alert. Were you alert or were you dizzy?

Michael Barden

No, I would I was alert. I was bed bound, definitely. But I was alert. They gave me seven whole blood transfusions after they finally found some blood for me.

Barbara Pruitt

Oh my goodness.

Michael Barden

And two treatments of IVIG. And at the end of my six-day hospital stay, my hemoglobin had decreased to 7.5. And doctors in Austin felt I was okay to travel back to San Francisco. They put me on a 100 milligram dose of prednisone daily and told me to go book get a blood test and see my hematologist as soon as possible when I arrived back in San Francisco.

Barbara Pruitt

Right, right. And, and you got back to San Francisco and saw your doctors and what transpired.

Michael Barden

Well initially after getting back from Austin my hemoglobin held at around 8.5 and I felt I actually felt good i completed blood mobile shift and I’ll talk more about this later and then I went in for my weekly CBC and my hemoglobin had crashed again this time to 4.8.

Barbara Pruitt

Oh, boy.

Michael Barden

The good news was, and I did not take it well when they told me I was at 4.8. After everything I'd been through, the nurse said I would have to take an ambulance to the hospital and get a room. And I just, I lost it. I thought i just, I did not want to go back to the hospital after just spending all the time I had spent in it.

So, the good news is that they agreed with me and that instead of taking me in an ambulance to the emergency department, I was told I could go directly to the infusion center where I could be treated as an outpatient.

Barbara Pruitt

Good.

Michael Barden

They gave me two units of whole blood and in the days that followed, I had an IVIG treatment, then another two units of whole blood, then another IVIG treatment. And at the end of the week, my hemoglobin sat at 8.5 again.

Barbara Pruitt

Great, which you felt good with over eight was good for you.

Michael Barden

Yeah, I did. i did. Yeah, they told me if it dropped below eight, I was going to have to come back for another transfusion. But I went home, continued taking my 100 milligrams of Pregnizone, gradually tapering. I also continued my Alveas, and the doctor requested that I got CBC weekly. Then I began a four-week course of rituximab in November of 2025. I experienced just some minor reactions to that drug I’m saying this because i read the boards a lot on Facebook for the PDSA and for others support sites for ITP and people are very concerned about the side effects of rituximab but my side effects were somewhat normal. And currently, roughly two months after the fourth rituximab infusion, my hemoglobin sits at nine. So, my red blood cells are at three. And really, it's unclear whether the rituximab is working for me.

We are giving it more time. I remain on prednisone and I'm awaiting whatever treatment may come next, but for now we're waiting, you know, we're still waiting for the rituximab to have some effect on me. We shall see.

Barbara Pruitt

Right. Now, I know that your wife found the PDSA website and you just said that you do spend some time on the Facebook page and looking at the website. Has that community, the ITP community and the information that you get, how has that affected you?

Michael Barden

Well, I realized I wasn't alone. There are other people like me.

Barbara Pruitt

That's, that is, I have to say, that is so important, that statement, because that's exactly how I felt when I found that website.

Michael Barden

It is, oh my God.

Barbara Pruitt

It was like, oh my gosh, there's people out there that know what I'm going through.

Michael Barden

Yeah, because going into this, I had no idea what ITP was. I didn't even know it existed. And to suddenly have it and wonder what the heck it is that I have and to find a resource like PDSA and learn about other people who have it, it was so important to me.

Barbara Pruitt

Absolutely. Well, have you found that I know our lives are busy and we're busy running around. this is prior to the diagnosis. And have you found since your diagnosis, are you more in touch with your body? Are you more aware?

Michael Barden

Well, I'm still learning to neither get too high or too low about the numbers.

Barbara Pruitt

Emotionally?

Michael Barden

Yeah, emotionally, you know. For example, this past week, I felt pretty good. I was walking around the city, avoiding as many hills as I could, and stopping for breath only a few times. I really felt like the rituximab might have been kicking in and I had turned the corner with my treatments and my next test was going to reverse the downward trend I'd been on. But that's not what happened. When I got the CBC results, my hemoglobin was down, as were my red blood cells, and I was really disappointed. I told myself to stop trying to predict numbers, which I'm terrible at. They are what they are. And the true test is how I feel.

Barbara Pruitt

Very much so. That's such an important part of your treatment and moving forward.

Michael Barden

And I think this is the way it's going to be for me. There may not be a miracle cure. Maybe I was expecting too much out of rituximab. Evans is a serious thing and I need to reconcile that and do the best I can every day.

Barbara Pruitt

I see that you've also since your diagnosis you've retired and you were concerned that you weren't going to have anything to go to when you retired but now you've obviously you've found something tell us about what you're what you're doing in your retirement

Michael Barden

Well, you know, it's, funny and I can't say thankfully, I'm sure that's not the right word, but ITP suddenly provided opportunities for me to volunteer and be involved in that were important to me, that I cared about. And when I did retire, I had ITP while I was still working, by the way. When I did retire, I retired with purpose. My work with ITP means more to me with each passing month. PDSA is there to support me.

And I am there to support others, to let them know they are not alone if they're new to the to the disease in PDSA, to share our journeys, to connect with resources, to lobby representatives and senators, for example, in our trip to Washington, D.C., and just to be a friend or whatever it takes.

Barbara Pruitt

That's wonderful. You've turned lemons into lemonade as they say.

Michael Barden

Yeah, and that's somewhat literal in that I'm also the juice and cookies guy on the Stanford Bloodmobile.

Barbara Pruitt

Oh, wonderful. So how often do you do that?

Michael Barden

So, when healthy, when I’m healthy I participate in roughly four blood drives a month that not my blood, but we collect about 120 plus pints of whole blood in those four drives. And I make it a point to give extra thanks to our donors, emphasizing the value of their donation to the warriors in both the ITP and Evans communities. And if they really want to talk about it, I share some of my story with them. And there's a few people that know me now and ask me right away how I'm doing or notice when I'm not on the blood mobile for a long time, which is happening right now. I haven't been able to do a blood mobile shift in a while. But the Stanford Blood Center is very, very supportive of me and they just want me to feel good and be better when I'm on the blood mobile. So, the fact that I can't participate as often and as I'd like is not a big deal. When I feel good, I can get a shift and be the juice and cookies guy.

Barbara Pruitt

That's great. You're a valuable volunteer for them, I'm sure. And, and just knowing where you're coming from with your heart and um expressing with the people that are coming in and donating blood. I'm sure that means a lot to those people too, that, that they are not only helping the community, but they could be helping you personally. And sometimes, sometimes, you know, a patient will donate blood and have no idea where it goes or who it goes to. But to connect the dots really makes it real for them.

Michael Barden

That's right. In fact, even the nurses that work for Bloodmobile, they need a connection too. And they're all very concerned about me. And I think it gives them perspective as well. They're not just you know herding donors through and collecting their pint and they never really see what happens to blood. But when I talk to them, they have a much better understanding of how what they do affects people's lives.

Barbara Pruitt

That's wonderful. So, you are educating them in addition being involved.

Michael Barden

Yeah. And, and it was the same thing with ITP when I was in the hospital for those 21 days, I met nurses who had never heard of ITP before. And I sat them down on my bed and said, let me tell you about it. So, that I did. In fact, when I was in Austin, I was visited by a hematologist who was explaining my condition to me and the doctor. And from the other direction, I was asking very poignant and knowledgeable sort of questions that revealed that I knew quite a bit and finally the doctor said, Who are you? Thinking that perhaps I was another doctor who had come to the hospital for treatment that it's good to be informed.

Barbara Pruitt

Right. Yeah. It is. It's very good to be informed. And that's one of the benefits of the PDSA website is to be informed about the treatments that are available and the upcoming treatments and the things to avoid and, and A lot of that information is not known by doctors that don't see ITP or Evans syndrome very infrequently, if ever.

Michael Barden

That’s right.

Barbara Pruitt

So oftentimes the patient becomes the teacher. That's not abnormal in our situation or in anybody that has a rare disease. I'm sure they sometimes find that they have a lot more knowledge than the doctor in front of them because it's so rare.

Michael Barden

Well, you know i went in for subsequent examinations of my teeth and cleaning and whatnot And I gave my dentist quite a lesson on a ITP. I mean, that is a profession that that needs to know about ITP because he probably sees other people that have mysterious bleeding of the gums during examinations. So, he was very attentive to what I was telling him about the disease. And I just hope that maybe in the future, he'll be able to connect the dots with people and maybe at least tell them that they might consider it asking the doctors to get a CBC test.

Barbara Pruitt

Absolutely. Well, the bleeding gums is one point that a dentist really needs to know about. And then if there are blood blisters inside the mouth, that's a big red flag. And if they're not aware of what that actually means, that's a disservice to their patient. So, I know I've had conversations with dentists through the years too. So, I'm glad that you're, you're, broadening their knowledge on this and enlightening them so well is there anything else you would like to share with our listening audience that we've not covered we've covered quite a bit of information here

Michael Barden

Well, it is my opinion that clinic clinicians put too much emphasis on numbers. They need to listen to their patients. ah More than once I told my doctors how badly I was feeling and in response heard them say, your numbers look okay. Well, there is fatigue and there is brain fog and there is dizziness and there is a tremendous amount of anxiety associated with these conditions. But there are no numbers about those things. I also wish, and we were just touching on this, there was more general awareness of ITP along the medical community.

Barbara Pruitt

It's very difficult I know I’ve been volunteering for years at the American society of hematology conference where we have a booth the PDSA has a booth and we've got all our information there that we want to pass out to the hematologists, the 40,000 of them from all across the world that come to this conference.

And, you know, first of all, it's unusual to find somebody who knows who we are. It's the doctors that come by and say, Oh, I love you guys. I need more of your pamphlets. I pass them out to all my ITP patients or all of my bleeding disorder patients. You know, I send them to your website. And you're absolutely right. The information is hard to get out there. And so your efforts, you're spreading the word is very valuable. And that's what the PDSA tries to do is really enlighten the medical community about not only the treatment, but about ITP and our community should they have a patient with ITP or another bleeding disorder.

So, we all have to work in that direction and enlighten our medical professionals about ITP bleeding disorders and our website. So, well, I have to say, Michael, your positive outlook and what you're doing is definitely of benefit to you. I know there are ups and downs in this disease as with many disorders, but, You know, we have to keep our eye on the future and hopefully things will come around that will be beneficial to us and our treatment. And I know with Evan syndrome, you've got extra hurdles to go over and i I wish you well in the future. I hope that everything that you're learning and putting together will help you in the future and that the doctors will be able to treat you precisely, you know, for you and your condition and how you're feeling.

Michael Barden

Well, I've received such great treatment and support from particularly family, friends, and the nurses that have treated me. And in all cases, my goal is to try to pay it forward because I know I'll be back at some point in that hospital again. And I just thank you for this amazing opportunity to share my journey to date. I really appreciate it. Thank you.

Barbara Pruitt

Well, thank you so much for sharing your journey with us today, Michael. We wish you all the best in the future. And hopefully, we'll see you at an upcoming PDSA conference.

Michael Barden

I will be there in Salt Lake.

Barbara Pruitt

Well, I'm planning on being there too, so I'll meet you in person.

Michael Barden

All right.

Barbara Pruitt

That'll be great.

Michael Barden

Very great.

Barbara Pruitt

You may not be aware, our listening audience, but ITP is not the only platelet disorder that the PDSA deals with. like Evans syndrome, there are many other more rare platelet diseases and disorders out there that need our support. The PDSA.org website has more information on all of those, so please take a look. And for now, I thank you for listening.

Narrator

   

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. 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.   

Barbara Pruitt

Listening to Michael's story reminded me of how important knowledge is. You need to learn as much as you can about your diagnosis. That's what the PDSA is all about, giving you accurate information about causes, symptoms, current treatments, future treatments, the guidelines for care, and so much more.

Like many of us, Michael found himself teaching doctors and nurses about ITP because it is rare. To be your own health advocate, you need to be informed. Get your information from trusted places like the PDSA website, support group meetings, or the National Institutes of Health. Go to the PDSA conferences and ask the experts questions. Every year, when I return from the PDSA conference, my doctor asks me, so what's new in the world of ITP? I can't tell you how many times patients have shared new information with their doctors that have change their course of treatment for the better. Platelet Disorder Support Association So it's time to start learning because knowledge is power. That's it for today. Until next time, I'm wishing you lots of happy, healthy platelets.

Narrator

   

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 Mayorga for composing our theme music. 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. 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. Remember, you are not alone.