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A Life-Altering Battle with ITP, Evans Syndrome, and Uncertainty: Michael's Journey
63 Plays1 month ago
When a small shaving cut wouldn’t stop bleeding, Michael Barden had no idea it would lead to a life-changing diagnosis of immune thrombocytopenia (ITP) and later, Evans syndrome. In this powerful episode, Michael shares the shocking moment police were sent to his home because his platelet count had dropped to 3,000, multiple extended hospital stays, ICU admissions, transfusions, and the emotional toll of living between unpredictable lab numbers. But this is more than a medical story. It’s about resilience, becoming your own advocate, educating doctors, supporting the rare disease community, and finding purpose through PDSA and volunteer work. Michael’s honesty about fear, frustration, and hope makes this an episode you won’t want to miss.
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Transcript
Introduction: Michael's Diagnosis of ITP
00:00:00
Speaker
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.
00:00:14
Speaker
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 plate level was at 3000.
00:00:30
Speaker
three thousand 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.
00:00:50
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?
00:01:04
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.
Journey with ITP and Evans Syndrome
00:01:19
Speaker
Here's your host for this episode, Barbara Pruitt.
00:01:30
Speaker
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.
00:01:42
Speaker
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.
00:01:56
Speaker
Before we dive then 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.
00:02:16
Speaker
For some people, that means low platelets, like an ITP. But it can also mean low red blood cells or low white blood cells.
00:02:27
Speaker
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.
00:02:42
Speaker
With that in mind, let me welcome Michael Barden. First of all, thanks for having me and thank you for the kind introduction. Well, thank you for sharing your journey with us today.
00:02:56
Speaker
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. That's right.
00:03:10
Speaker
Now, before your diagnosis, you had some months of some subtle symptoms. What what was going on then? I had several warnings that something was wrong.
00:03:23
Speaker
Roughly six months before being diagnosed, my calves and ankles itched 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.
00:03:43
Speaker
Nope, it wasn't the detergent. No, it was petechiaire. Yes, that's exactly what it was. learn that later, I'm sure. yeah and And what else what other kind of symptoms did you experience? Well, about six months before being diagnosed, I visited my dentist for my normal, regular cleaning.
00:04:04
Speaker
And my denist 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.
00:04:19
Speaker
And he didn't take it any further. Okay. And did you have bruising also? No, not at that time. No, no bruising. Okay. But at that point, I was still itching in my calves and and ankles. and And now I have a comment about bleeding my in my gums. So, you know, there were signs.
00:04:41
Speaker
Right. And I know that you experienced an aha moment. What was that? Well, um 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.
00:04:58
Speaker
Not real heavy ah 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.
00:05:11
Speaker
Then it stopped. Again, proof that it was indeed the dry desert air, right? Wrong. You would think so, right. But the real aha moment came the
Critical Hospitalization and Treatment Challenges
00:05:21
Speaker
day before I was diagnosed.
00:05:23
Speaker
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.
00:05:38
Speaker
And combined with the comments from my dentist, the the bloody nose I had had, and some blood in the urine that I experienced as well, This was my aha moment.
00:05:50
Speaker
Right. you You started putting those puzzle pieces together. Yes. 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. That's right.
00:06:05
Speaker
For various high tech companies in Silicon Valley. That's right. and i'm I'm sure this was a shock to you. Yeah, it was. That cut was so small and I had never bled like, like,
00:06:17
Speaker
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.
00:06:29
Speaker
He immediately ordered a CBC. And instead of going straight to work that morning, I went to get a blood draw. Right. And then what happened? Did you get that call, that emergency call? Well, we were watching TV that evening and our phones blew up.
00:06:46
Speaker
I mean, we had so many messages and and ah text messages, voice messages. You just couldn't believe it. 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.
00:07:05
Speaker
three thousand Oh, gosh. Now, SFPD is the San Francisco Police Department, 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.
00:07:30
Speaker
We're on our way. so i 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. They took nearly 50 vials of blood from me, and I was transferred out of the e b ED to a hospital room to spend the night.
00:07:52
Speaker
At this point, I know nothing about ITV, nothing at all. Wow. And you went from... Diagnosis. I mean, you got the diagnosis there in the hospital, correct? Was it the following day? or That's right. It was the next morning. They they ran all those tests on all those almost 50 vials during the night.
00:08:13
Speaker
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? Right. Right.
00:08:27
Speaker
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 15th, 2023.
00:08:41
Speaker
a Very important date for you to remember. I'm sure. Yeah. Your life changed a lot. I'm sure. Absolutely. Yeah. Who would have guessed? I know. i have a question. The hospital you were in, is it a teaching hospital?
00:08:55
Speaker
I'm not sure. I don't know if it is or not. 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.
00:09:08
Speaker
And 50 vials of blood is quite extensive. And sometimes a lot of those go to research. That's what I was wondering. That's interesting to know. And I think you were right about it being a training hospital.
00:09:19
Speaker
Now that you mentioned that the 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 ah it is a teaching hospital.
00:09:33
Speaker
Right. That explains a lot of that. Now in February the next year, which was 2024, ended up in the hospital then? or twenty one days what what happened then I had received some treatment called WinRow and um the result was not good for me.
00:09:56
Speaker
I was totally breathless with a racing heart even after the simplest of activities, you know, getting dressed. I barely could get dressed or even walking 10 feet.
00:10:07
Speaker
In addition, I had a near constant headache and I was extremely fatigued and dizzy. So my doctor... felt i was allergic to WinRow and ordered that I stop receiving it.
00:10:21
Speaker
My symptoms, however, didn't really go away, even and when I stopped with the WinRow. 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.
00:10:42
Speaker
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.
00:10:55
Speaker
I had zero platelets. And my hemoglobin at the time was just under six. Wow. And that's really low. So I started steroids for four days. I was given IVIG for a couple days.
00:11:12
Speaker
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.
00:11:24
Speaker
My platelets remained at less than 2K. It was clear that what had worked in the past, basically steroids plus IVIG, was not going to work this time.
Diagnosis of Evans Syndrome
00:11:35
Speaker
They put me on end plate. I had three injections of that. I started rituximab. I had two infusions of that.
00:11:43
Speaker
Nothing happened. My body seemed broken and I was quickly losing hope. oh 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.
00:12:00
Speaker
Then the gastrointestinal team visited me. and 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.
00:12:14
Speaker
The endoscopy would have to wait, but now I had more waiting and worrying now about internal bleeding. They put an alarm on my bed. I couldn't get up without no having a nurse come in to assist me.
00:12:28
Speaker
But finally, finally, finally, things changed. I had, it after all that they did for me, and none who's to say what really worked? Because I was just a ah big lab experiment at that point.
00:12:41
Speaker
Finally, things changed. i had a platelet count of three. This was after 18 days in a row of less than two. oh my goodness. The next day, I was at 16 on my discharge.
00:12:55
Speaker
I was at 140. spent days in the hospital. Gosh, that's a long time to be in the hospital. I ate every meal they had to offer.
00:13:08
Speaker
oh gosh. 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? Well, obviously, they were very, very concerned about me. And my wife was my great Internet researcher. was...
00:13:29
Speaker
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.
00:13:43
Speaker
um 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 and I was consuming information about what it means to have ITP, what caused it, what may cure it, what the treatments are, et cetera. So i was very thankful for that. And my family um gathered, neither of my daughters live in San Francisco. they came from l a and Austin, Texas to visit me and they were of great comfort to me because they i got pretty dark.
00:14:19
Speaker
after all those days of having no progress at all in my platelets count. So I thank them for that. Right. Well, that was back in February 2024. Yeah.
00:14:34
Speaker
So following that, you ended up with a platelet count that pretty much was stable for a year, correct? Yes. um Well, I went through another treatment, um,
00:14:49
Speaker
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.
00:15:02
Speaker
My platelet count was out of control. It went from 964,000, that's almost a million, to five in two weeks. And then back to 536 the next week.
00:15:17
Speaker
At this point, I was getting pretty frustrated, um and I sought second and third opinions. yeah Both hematologists agreed that I indeed had ATP, which was a basic question I wanted them to answer for me. They both agreed, and they both recommended that i consider taking L-Trompeg, specifically Alveas.
00:15:40
Speaker
So I stopped the end plate and began taking Alveas in May of 2024.
00:15:47
Speaker
And it worked very well for me. Fast forward one year, Helveas kept my plate levels in the normal range. My hemoglobin remained below normal, but not terribly so.
00:15:58
Speaker
That is until April 2025. And then that ended up in another hospital stay, correct? That's right. I became increasingly out of breath, fatigued and dizzy.
00:16:09
Speaker
My urine was dark. My heart was racing. I had a mouth full of blisters. So I went in for my CBC and my hemoglobin and red belt blood cell counts had crashed. I was again told to go to the hospital as soon as possible.
00:16:26
Speaker
Oh, gosh. I'm sure you were worried this was another round of what you had previously experienced. Yeah. In some ways, it was quite similar, you know, other than the things they told me.
00:16:38
Speaker
Well, I was given multiple blood transfusions and I was put on a heavy dose of steroids. Okay. Again, they collected a lot of blood from me for analysis.
00:16:48
Speaker
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, um they told me I had Evans syndrome.
00:17:04
Speaker
So I wouldn't say entirely out of the blue because in the course of my 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.
00:17:23
Speaker
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?
00:17:36
Speaker
Yes, it was. But honestly, I was not surprised. By this time in my journey, I consumed a lot of content regarding ITP. And I had read, as I mentioned, several descriptions of Evans syndrome.
00:17:50
Speaker
I felt it matched my symptoms. okay I was COMDS positive. I had a lower than normal hemoglobin, red blood cells, and hematocrit. I was often out of breath.
00:18:02
Speaker
So like you say, I was a bit relieved that maybe because we understood better what was wrong with me, we could fix it. I guess I would say now, how wrong can a person be?
00:18:13
Speaker
Yeah. Well, you know, the shortness of breath, the dizziness can can be caused by a lot of things and ah oftentimes in regards to your heart function.
00:18:24
Speaker
But as you found out with the Evans syndrome, the low red blood cells, 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,
00:18:38
Speaker
You're going to feel lightheaded. yeah um You're going to have that dizziness and and then the palpitations and et cetera, et cetera. It's amazing how much you can find out on the PDSA website as well as other places online, things that are at your fingertips. Yes.
00:18:55
Speaker
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.
00:19:06
Speaker
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. Right. 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.
00:19:24
Speaker
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.
00:19:43
Speaker
My wife called 911. The paramedics arrived and I was taken to a hospital in Austin. Not the way to start a vacation? No, not at all. and My family was there with me. They saw me collapse.
00:19:55
Speaker
And that was a different thing for me. Suddenly ITP were not just numbers and i right itp can be just numbers and a report, but to see, you know, your father collapse poolside and go unconscious, that must've been very trying for them.
Ongoing Treatment and Community Support
00:20:10
Speaker
Right. Right. I'm sure. and 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. Oh, that that's horribly low.
00:20:26
Speaker
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. Yeah.
00:20:42
Speaker
I'm surprised you were alert. Were you were alert or were you dizzy? I was alert. I was bedbound, definitely. Okay. But I was alert. They gave me seven whole blood transfusions after they finally found some blood for me.
00:20:56
Speaker
And two treatments of IVIG. And at the end of my sixth day hospital stay, my hemoglobin had increased to 7.5. five And doctors in Austin felt I was okay to travel back to San Francisco.
00:21:11
Speaker
They put me on a 100 milligram dose of prednisone daily and told me to go but get a blood test and see my hematologist as soon as possible when I arrived back in San Francisco.
00:21:22
Speaker
And you got back to San Francisco and saw your doctors and yeah what transpired? Initially, after getting back from Austin, my hemoglobin held at around 8.5. And I felt, I actually felt good.
00:21:36
Speaker
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. Oh boy. news is,
00:21:50
Speaker
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.
00:22:06
Speaker
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 it's 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.
00:22:27
Speaker
Good. 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.
00:22:38
Speaker
And at the end of the week, my hemoglobin sat at 8.5 again. Great, which you felt good with. Yeah, I did. i did. Over eight was good for you. Yeah, but they told me if it dropped below eight, I was going to have to come back for another transfusion.
00:22:54
Speaker
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.
00:23:10
Speaker
Then i got 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 other support sites for ITP, and and people are very concerned about the the side effects of rituximab, but my side effects were somewhat normal, and Currently, roughly two months after the fourth rituximab infusion, hemoglobin sits at nine.
00:23:46
Speaker
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.
00:23:57
Speaker
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.
00:24:09
Speaker
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.
00:24:20
Speaker
Has that community, the ITP community and the information that you get, how has that affected you? Well, I realized I wasn't alone. There are other people like me.
00:24:31
Speaker
That is, I have to say, that is so important, that statement. That's exactly how I felt when I found that website. It was like, oh my gosh, there's people out there that know what I'm going through. Yeah, because going into this, I had no idea what ITP was. I didn't even know it existed.
00:24:49
Speaker
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.
00:25:01
Speaker
Absolutely. Have you found that I know our lives are busy and we're busy running around. This is prior to the diagnosis.
00:25:12
Speaker
And have you found since your diagnosis, are you more in touch with your body? Are you more aware? Well, I'm still learning to neither get too high or or too low about the numbers.
00:25:26
Speaker
Emotionally? ah Yeah, emotionally. he knows okay that 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.
00:25:41
Speaker
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.
00:25:52
Speaker
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.
00:26:07
Speaker
They are what they are, and the true test is how I feel. Very much so. That's such an important part of your treatment and moving forward. and i think this is the way it's going to be for me.
00:26:22
Speaker
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. Right.
00:26:35
Speaker
Well, 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 doing in your retirement.
00:26:51
Speaker
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.
00:27:08
Speaker
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, should I ask, and I am there to support others.
00:27:21
Speaker
to let them know they are not alone if they're new to the disease and 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.
00:27:38
Speaker
That's wonderful. You've turned lemons into lemonade, as they say. Yeah, and that's somewhat literal in that I'm also the juice and cookies guy on the Stanford Bloodmobile. Oh, wonderful. So how often do you do that?
00:27:52
Speaker
When I'm healthy, I participate in roughly four blood drives a month. Not my blood, but we collect about 120 plus pints of whole blood in those four drives.
00:28:04
Speaker
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 Waha communities. And if they really want to talk about it,
00:28:17
Speaker
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 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 blood mobile shift in a while. and But the Stanford Blood Center is very, very supportive of me. and 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.
00:28:47
Speaker
When I feel good, i can get a shift and and be the juice and cookies guy. 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 understanding expressing with the people that are coming in and donating blood. I'm sure that means a lot to those people too, that yeah that they are not only helping the community, but they could be helping you personally. That's right.
00:29:15
Speaker
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. That's right. In fact, even the nurses that work for Bloodmobile,
00:29:31
Speaker
they They need a connection too. And they're all very concerned about me. and And i think it gives them perspective as well. They're not just herding donors through and collecting their pint and they never really see what happens to the blood. but But when I talk to them, they have a much better understanding of how what they do affects people's lives.
00:29:53
Speaker
That's wonderful. So you are educating them in addition. 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.
00:30:04
Speaker
And I sat them down on my bed and said, let me tell you about it. In fact, when I was in Austin, I was visited by hematologist who was explaining my condition to me. 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.
00:30:36
Speaker
It's good to be informed. 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 a lot of that information is not known by doctors that don't see ITP or Evans syndrome.
00:31:01
Speaker
very infrequently, if ever. That's right. So oftentimes the patient becomes the teacher. that's That's not abnormal um in our situation or in anybody that has a rare disease. they 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. Well, you know, I went in for subsequent ah examinations of my teeth and cleaning and whatnot.
00:31:29
Speaker
And I gave my dentist, quite a lesson on eight 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.
00:31:44
Speaker
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.
00:32:01
Speaker
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, yeah that's a a big red flag. yes 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 broadening their knowledge on on this and enlightening them.
00:32:30
Speaker
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. It is my opinion that clinicians put too much emphasis on numbers.
00:32:43
Speaker
They need to listen to their patients. 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.
00:33:03
Speaker
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. Yeah, it's very difficult. I know I've been volunteering for years at the American Society of Hematology Conference, um 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
00:33:35
Speaker
first of all, it's unusual to find somebody who knows who we are. 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 ble bleeding disorder patients. You know, I send them to your website.
00:33:52
Speaker
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.
Conclusion: Encouragement for Awareness and Advocacy
00:34:01
Speaker
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.
00:34:16
Speaker
So we all have to work in that direction and enlighten our medical professionals about ITP, bleeding disorders and our website.
00:34:29
Speaker
Well, I have to say, Michael, your positive outlook and what you're doing is definitely a benefit to you. i know there are ups and downs in this disease as with many disorders, but um you know we have to keep our eye on the future and hopefully things will come around that will be beneficial to us in our treatment.
00:34:54
Speaker
And I know with Evan syndrome, you've got extra hurdles to go over. And 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.
00:35:13
Speaker
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 um because I know I'll be back at some point in that hospital again.
00:35:30
Speaker
and I just thank you for this amazing opportunity to share my journey to date. I really appreciate it. Thank you. Well, thank you so much for sharing your journey with us today, Michael.
00:35:41
Speaker
We wish you all the best in the future. And hopefully, we'll see you at an upcoming PDSA conference. I will be there in Salt Lake. Well, I'm planning on being there too, so I'll meet you in person. That'll be great. Very great.
00:35:56
Speaker
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.
00:36:15
Speaker
The pdsa.org website has more information on all of those, so please take a look. And for now, I thank you for listening. How do you live your life with a bleeding disorder like ITP?
00:36:29
Speaker
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.
00:36:42
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.
00:36:56
Speaker
Listening to Michael's story reminded me of how important knowledge is. You need to learn as much as you can about your diagnosis.
00:37:09
Speaker
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.
00:37:25
Speaker
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.
00:37:42
Speaker
Get your information from trusted places like the PDSA website, support group meetings, or the National Institutes of Health.
00:37:55
Speaker
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?
00:38:15
Speaker
I can't tell you how many times patients have shared new information with their doctors that have changed their course of treatment for it the better.
00:38:29
Speaker
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.
00:38:46
Speaker
Thanks for listening to the PDSA podcast. Bruised but not broken. Living with ITP. Made possible by our presenting sponsor, Amgen.
00:38:57
Speaker
Special thanks to Gus Majorga for composing our theme music.
00:39:03
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.
00:39:21
Speaker
As always, please speak with a healthcare 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.
00:39:38
Speaker
Remember, you are not alone.