Barbara Pruitt:

Even though there's things that as an ITP patient, whether you're a child or an adult, there's things that we should not do that are dangerous for us. There's an awful lot of things out there that we can do. And that's what you need to look for. What are those things that we can do that give us enjoyment in our life? And look forward to them and do that. You know, as long as you're being safe and cautious and realizing that ITP goes along the journey with you...

Barbara:

Enjoy your life.

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:

Hello, everyone. I am Barbara Pruitt. I'm an ITP patient advocate and your host of today's episode. We're here to lead you through unraveling the mysteries of your life with ITP. Joining me for our very first episode of “Bruised but Not Broken: Living with ITP,” is our PDSA President and CEO, Caroline Kruse. Welcome, Caroline.

Caroline Kruse:

Oh, thank you, Barbara. It's so nice to join you. I know this has been a pet project of yours and a long time coming, so I'm excited to be here for the very first episode. And I have to tell you, I feel like this is a full circle moment for me. As you know, I had a 20-year career as a radio and TV producer/reporter before I found PDSA and before I was diagnosed with ITP. And I had a weekly radio show called “Family Matters.” It was a two-hour show. And my partner and co-host, Jacquie Chakirelis, who is actually a dear friend of mine from high school, we started the show together. I remember she said to me, “Caroline, we should start a podcast.” And I said to her, “What's a podcast?” I mean, this is like 28 years ago.

Barbara:

Right.

Caroline:

Like, what's a podcast? And I recently talked with her and I said, Jackie, I said, we could be millionaires if I would have listened to your your idea. So, I, yeah, so this is a full circle moment for me. But thanks for having me.

Barbara:

Well, I appreciate your knowledge and input of doing a radio show because this is so similar, and you've got all that production background which is terrific as far as the podcast is concerned. I thought today we would talk a little bit about your experience with ITP, what got you to the PDSA, and my experience, because we both have very different situations, like everyone with ITP. Our circumstances are all very different. So, had you ever heard of ITP when you were diagnosed, and when were you diagnosed?

Caroline:

No. And as a matter of fact, you know mentioning that I had been a television and radio reporter and producer for over 20 years, I was actually a health reporter for a number of years. And, so I had some level of knowledge of different health conditions and of course had never heard of ITP until I got that call at three o'clock in the morning with a doctor telling me, I always remember this, you know, “Mrs. Kruse, this is Dr. Jones, we just got your CBC back, your test results. and you have a platelet count of 2,000, and you need to get to the emergency room immediately.” And, at that time, the only thing I knew that was associated with a platelet count, whether that's low or high or whatever, was of course leukemia. So that was the first thing I asked him on the phone, “Oh, do you think I have leukemia?” And he said, “Well, we don't know.” And when he happened to call me, my husband was out of town on business and my kids -

Barbara:

Wow.

Caroline:

Yeah, and I had my children were three and six and they were, you know, in the bedrooms sound asleep. And of course, I said to him, “Well, can't it wait to the morning?” I said, “I can't come to the emergency room right now. My husband's out of town. I have small children.” And he said, “No, you must come immediately and do not take a shower. Do not shave your legs. Do not brush your teeth. Do not bump your head. You could bleed to death.” And yeah, fortunately my parents lived close by. So of course, I called my parents, and my mom came over and watched the kids and my dad took me to the emergency room. I mean, I have to just say, you know, prior to that, I had actually not felt well for about three years. I had debilitating fatigue, which started about six months after the birth of my second child. And, you know, Barb, having ITP, you're having ITP, and I know you're going to share your story, but for many of the listeners out there, they know what type of fatigue I'm talking about with ITP, right?

Barbara:

Right.

Caroline:

It's a completely different level of fatigue. And I think I related to the fact that I was a new mom and so I had a newborn and a toddler. And so, you know, all of the mothers out there know what it's like to be tired and have fatigue.

Barbara:

It’s exhausting, yeah.

Caroline:

But this was like somebody flipped a switch. And, you know, it was just a whole other level of fatigue. And for three years, I had a number of tests. At first, I was told I had MS and then I was told no, that was a mistake.

Barbara:

Oh, my goodness.

Caroline:

And, you know, I, even with a very low platelet count, I wasn't a bleeder. I had a little bit of petechiae. So I think, I mean, this is my own personal theory, but I think, you know, a few times when I went in and had a CBC, which, you know, at the time I didn't know what that even meant, but when I, when I went in and had the test, my platelet count was normal at that time. So, they just never picked up on it. And I didn't have any really, any bleeding. I had a few odd bruises, but that was it. It was just really the fatigue. So, you know, for three years I went from, in the beginning, oh, we think you have MS to the end of three years, a doctor said to me, “There's nothing wrong with you. It's all in your head.”

Barbara:

Oh, great.

Caroline:

Yeah. And then, and then, I ended up having the blood test where I had a platelet count of 2000. So yeah, in a nutshell, that was, that was my journey. That was the beginning of my journey with, with ITP.

Barbara:

Well, that middle of the night phone call to scare you to death sounds very familiar. I've heard that from other patients too that, you know, by the time their lab gets sent from the doctor's office to the lab and it gets processed and red flagged, it's usually the middle of the night. And I know I went for many years that I would have them right on the requisition for the lab test: “Do not call with platelet count.” Sometimes that worked, but I still did get a few calls in the middle of the night. But yeah.

Caroline:

You don't need to feel that that anxiety on top of everything else, right?

Barbara:

And actually, it's usually a doctor on call who has no idea who you are. And when they see that red flag with that low count, they're hysterical themselves. And I've talked them off the cliff many times. I said, “It's OK. If you look at my history, this is normal for me. And I'm fine. You woke me up from sleep. I'm going to go back to sleep. And I can fall asleep fine. You know, go on with your evening. Thank you for your concern.”

Caroline:

Yeah, that that you know I remember being in the hospital one time. You know, I was hospitalized numerous times with a low platelet count so I could get my IVIG infusion to get my platelets up. and I remember after I had had ITP for a while and my platelet count was maybe 7,000, a resident came in and right away “You need a platelet transfusion! Let's order a platelet transfusion!” And I said “No, no, no, no, I'm waiting for my IVIG. You need to talk with my hematologist.” Because if they're not aware, a lot of physicians, right, if they're not aware of ITP and they see that low platelet count, they really go into a panic mode.

Barbara:

Oh, exactly. They do. I mean, that's kind of their training that, you know, this is so abnormal, that they're going to go into a panic about that. So, well.

Caroline:

And so, and I was going to say for, you know, for me, I had chronic ITP for three years. And as I mentioned, hospitalized a number of times. And, you know, we can talk a little bit more about treatments. But I am, I think, one of the the more rare individuals as an adult who went into remission. And there are a number of reasons for that. But I know for you, that is not your ITP journey.

Barbara:

No, no. We kept hoping that I would go into remission. I was diagnosed as a child. I was four years old. And actually, I was very fortunate that I was diagnosed pretty quickly. It was, you know, told to my parents, it could be leukemia, but they eliminated that possibility pretty quickly. And I was told that I had thrombocytopenia purpura. At that time, the only options they had were steroids and a splenectomy. And as a small child, I was on steroids for a long time, had the moon face, all the bad signs. I didn't sleep at night. And then at the age of seven, I had the splenectomy and neither one of them worked for me. So, I went without medication for a long time, just living carefully, because there was nothing else to be offered, until the 1980s when they started coming out with a couple other things. They were trying IVIG, and then different medications came along the way, and I've pretty much tried everything out there. And I've yet to go into remission. I'm, I guess, a hard nut to crack, but, I'm here and I feel like, you know, maybe I'm here for a reason, to share some stories, share some wisdom. That's what really got me thinking about doing a podcast, because having lived with ITP with extremely low numbers for my life, I've learned a lot along the way. And some things are harder to learn, and some things come later in life instead of sooner in life. And, you know, it's nice to be in a position where maybe you can share that information and that wisdom with other people that are on that same journey. And hopefully will help their journey a little bit better. So, that's why I started talking to you about a podcast, because I thought, a book is too much work, you know, and who wants to read the book? And things change constantly. The landscape is always changing. So, would my book be relevant in five years? Probably not. Who wants to read about me anyway? So.

Caroline:

Well, you know, I'm sure that you've had a lot of difficult days, but you're always such an optimistic, glass half full type of person. And I'm sure that has really served you well over all of these years.

Barbara:

I think so because, and don't get me wrong. I have had those blue days, you know, and, you know, when you, when you're going to the doctor and you're feeling good and you get your lab work drawn and you're like, oh, it's got to be up. My platelet count has to be a little bit higher because I feel so good. And then you get the call. Or then they tell you, nope, it's same thing or it's lower than it was. And you go home and it's like, boo-hoo, I want to just lay down on the couch and cry. How did this happen? What did I do? Of course, it's my fault, right? That my count went down. What did I eat? What did I breathe in? What did I ingest to cause this to happen? Well, I've learned, don't beat yourself up about it because we don't have the kind of control over it the way we do a lot of other things in life. This is something you have to just monitor, and you can't control it by what you're eating, breathing, drinking, doing. That's why at this stage and this year in 2024, ITP patients are fortunate because they have choices out there of treatments and for so long, we didn't have them. So now, there's options out there. So, somebody that's facing this new diagnosis, at least they know if A and B don't work, we've got C, D, E and F. And it's important to know which one of those is going to work for you.

Caroline:

Well, it kind of struck me as you were talking about when you were first diagnosed, and, and I know that was without sharing our age with everyone.

Barbara:

I'm older than you, so you're the youngster here.

Caroline:

I know that was about 60, well, what, maybe 50 years ago, 55 years ago. But do you know, you're talking about steroids and splenectomy. And the interesting thing about that is I was diagnosed in 2000, right? So, you know, maybe 20 years later than you and what was the treatment? Steroids and splenectomy. I mean, that's what I was offered, right? And so, you know, you're talking about the choices and options that ITP patients have today, right? And so just in the past 20 years, we've come such a long way. And when I started with PDSA, you know, I worked with three pharmaceutical companies. I mean, last year I worked with 20 companies that either have approved treatments or are developing ITP treatments.

Barbara:

Which is wonderful news for all of us ITP patients, you know.

Caroline:
Yeah, absolutely.

Barbara:

Everything out there.

Caroline:

Right, absolutely. And I, but I think that the piece that's still missing, you know, and as you know, PDSA has a research program. We fund research, we participate in research. But I think the piece that's still missing is understanding the mechanisms, the underlying mechanisms, or pathophysiology of individuals' ITP. Because I'm sure what caused your ITP was different than what caused my ITP. And if we could understand that, then we could have more targeted treatments for patients. And so instead of patients cycling on and off of, of treatments, you know, where those treatments don't work and then having to maybe have some of the, you know, the toxic side effects, we could look at someone and say, okay, we know that this is what causes your ITP. And so, this particular therapy will work for you. I think short of a cure, that would be the goal.

Barbara:

Yeah. And that sounds so hopeful for the future. I mean, they're making such headways in the medical field now for like cancer treatment and immunotherapy. And I remember when AIDS came out, I thought to myself, gosh, they're putting all this energy into research. Some of this has to be helpful for ITP patients.

Caroline:

It's funny because, well, and you mentioned earlier, you know, about being diagnosed at four and being diagnosed fairly quickly. I'm curious if, did you have a lot of bruising? Were your parents suspected of child abuse? Cause I know that that is an issue that comes up with, with some of the parents within our community.

Barbara:

Well, I had a lot of bruising from, you know, what my mother tells me. [Dog barks in the background.] Excuse my dog, I'm sorry, I am at home, I'm not in a sound studio. So, hopefully my dog will stop barking. But I did have bruising, my mom recalls it. I had black bruises on my body, which were completely abnormal. I mean, I did not have any before. Now I had three brothers, and she quizzed them about how rough they were playing with me. And even though she knew that they weren't playing rough. So, she took me, pretty quickly, to the pediatrician and that led to the diagnosis. I was fortunate as far as getting that diagnosis quickly. But back then too, there wasn't the information about child abuse and stuff like that. So, I don't think that was ever a question. However, I do remember moving to a new neighborhood. We moved from central Florida, we moved to Miami. And at that time, you know we had a neighborhood, we lived on a block, and I got to be very friendly with the the little girl next door, we were the same age. And the parents were wondering if I was being beaten. And not until they got to be good friends with my parents and the explanation because I explained it as a child. I said, “No, I have a blood disease and, you know, I bruise all the time.” But not until they got to know our family and understood. But, you know, it's interesting, because later on they said that that's what they were curious about.

Caroline:

And so, ITP has been with you really your whole life.

Barbara:

Yeah.

Caroline:

So, has that been more just kind of the norm for you? I mean, how do you think you dealt with it as a, as a child and as a teenager

Barbara:

Well, it's part of who I am. It's what I've grown up with. I don't really know anything else. And with that in mind, I, sometimes I have to kind of put myself out of myself to look at what I'm doing differently. And, I mean, I know I walk through life differently than a healthy person. I look for clear open spaces, so I don't run into things. I try not to be in a hurry because when you're in a hurry, you end up banging into the doorframe or knocking your arm on a table or whatever. There's a lot of things I do differently, but it's like second nature to me. You know, I don't cross my legs when I'm sitting at a table unless I'm positive that there's no leg under there that I'm going to bang my knee on. There's a lot of different things that I do. That's just part of my life. I don't consider it difficult. It's just kind of melded into the way I live.

Caroline:

You know, I see from, you know, reading parents' comments on the the PDSA Facebook group and hearing parents talk about their children's journey at the annual ITP conference and support group meetings. And I know you've attended almost all of the the meetings, and you hear this as well. Just the the real concern about how it's going to negatively impact their child's life, or even as a parent or as an adult with ITP, right? How that's going to affect my child's life. And I think about in my particular situation, you know, as I said, being diagnosed when my kids were three and six and for our family, again, not to take away from the difficult times because of course they're difficult. And my daughter does talk about how she's the one that was, you know, six, the older child. You know, we would get in the car, and I would say to her, “Now, if we get into an accident, right, and mommy can't talk to the police officer or the person driving the ambulance, you have to tell them that I have something called ITP. It's a bleeding disorder.” And, you know, couldn't go for bike rides sometimes with the kids. If I was tired or concerned about, you know, falling off my bike, I couldn't ski anymore with the kids. And of course, my daughter in particular remembers that. But on the other hand, you know, my daughter's a doctor now, my son actually works, he's an engineer, works for a pharmaceutical company. And I know that is because of the experience that they live with all their life of growing up with a mother who had a chronic illness. And I'm, so, it can also have a very positive effect on your life and your child's life. And, our upcoming spring issue of our quarterly newsletter, The Platelet News, is featuring Logan Resch on the cover. And Barb, you know Logan quite well. He's a young man with ITP, was diagnosed as a child, and he was part of our patient panel at our 2019 meeting that you participated in. You were on the panel with him. He's just a young, a wonderful young man. He's going to be a nurse because of his experience.

Barbara:

Well, I became a nurse because of the experience. I think, you know, it led me to the medical field, you know, in a strange way, but it made me very comfortable being around hospitals and doctors and all of that stuff. And I'm sure that it's kind of, you paved the path for both of your children, introducing them to medical issues and putting some responsibility on them. I know when my children were young, when they were old enough to understand, you know, they knew that I had ITP. They knew that if I fell or something at home, I was going to need their help. And I tell you, I give them a lot of credit because there were a couple of times that something happened, and they just went right into action. They were, you know, running into the freezer, getting a Ziploc bag full of ice. They were elevating my ankle, you know, my foot and holding it on and calling daddy, and telling him “Mommy fell and hurt her ankle.” So, I do give them a lot of credit. I didn't want to stress them about it. So, I've always kind of lived my life normally, you know, in other words, as active as I can be, and doing the normal things that a mommy does at that point and in time so that they knew that it was just an aspect of my life and wasn't, it didn't define me. It was part of me. And they were able to see all the other things that I was able to do. So, I think in a lot of ways it was a good experience for life challenges. They don't know who they're going to meet in the future and how you handle it. So, lessons should be learned all the way around.

Caroline:

Yeah. Would you, I know as we start to record more and more of these podcasts that you're going to share tips with our audience, as you said, 60 years of living with ITP, some of the the lessons that you've learned along the way, that can really benefit and help others who are living with ITP, whether they're new to the journey, or you know, have had chronic ITP for a while. But is there anything you would say that your parents did to help you or support you to really lead a relatively normal life?

Barbara:

Well, I think being a girl, a young girl, back in the 60s, they got me involved with things that were not physical. And so, I was a brownie, you know, a girl scout. I was in the church choir. I took swimming lessons. I took ballet and tap. I didn't lack for doing other things. And I think that made me feel like a normal kid. You know, I'd have bruises. You know, I remember going to elementary school with a black eye and I knew something was different. I could say thrombocytopenia purpura. That was like a big deal when you're four years old and you can feel that out of your mouth. But I didn't feel like I was missing anything. And I know that was one of the things that my parents felt was very important, that I was able to live my childhood, that I was able to enjoy it. Even into my teenage years when you kind of want to ignore the fact that you're different because everybody wants to fit in. And this is not something for necessarily teenagers now. Teenagers felt that way 10 years ago, 20 years ago. Everybody, when you're a teenager, you want to fit in. You want to be like everybody else. Again, I did a lot of things that the normal teenagers could do. At that time, I water skied. And there's no way I do it now for several reasons. But I think my counts then were probably between 20 and 30,000. And for me, I mean, all of us are very different. But for me, at 20 to 30,000, I was not bruising very much at all. So, there were things that I did. But and there were also things that I knew were best for me to avoid.

Caroline:

So, your parents didn't put you in a bubble?

Barbara:

No, no. And I have to say, I've been going to the PDSA conferences for years and years. And I've seen on occasion where a parent with all good intentions, and I realized that, I mean, being a parent, you can sympathize with another parent wanting to put their child in a bubble. You know, like they can't do this, they can't do that, they can't do this, you know really taking the enjoyment out of their life because they end up sitting on the edge of their seat, anticipating that something horrible is going to happen to them, instead of being able to live their life and enjoy their life. Because even though there's things that as an ITP patient, and whether you're a child or an adult, there's things that we should not do that are dangerous for us. There's an awful lot of things out there that we can do. And that's what you need to look for. What are those things that we can do that give us enjoyment in our life? And look forward to them and do that, you know, as long as you're being safe and cautious and realizing that ITP goes along the journey with you. Enjoy your life.

Caroline:

Do you think your ITP had impact on your brothers in any way? I know you said your parents tried to keep things as normal as possible.

Barbara:

Right. Well, I think that growing up as a child, the boys were very involved with sports. They were baseball, basketball, football, whatever the sport was, they were involved in it. I was not involved in sports, but they were aware of my situation. They would not wrestle with me. They had each other to wrestle with. So that wasn't as if it was an issue. As we've gotten older, and as we've been adults with families and spouses, every now and then they'll check in with me. So how are you doing? How are your platelets? What's going on? Because they know I'm involved. They know that I’m, my involvement with the PDSA is there and how important that is to me. It's nice that they check in because we're a close family and they're concerned. I appreciate that. That warms my heart.

Caroline:

Since you mentioned PDSA, when and how did you find PDSA?

Barbara:

One of those sleepless nights that I got up in the middle of the night, logged onto my computer, typed in “ITP.” Never thinking I'd ever find anything because I never had met anybody, this, I was probably 45. I had never met anyone with ITP all those years, typed in “ITP.” And after I got through some kind of a technology thing, I came across this website, the PDSA. And on the website were threads of people posting questions and people answering their questions and giving input. I spent the whole night reading through these, reading through these threads. I was just amazed. When my husband woke up in the morning, I said, “Peter, you don't know! This, there's people out there that feel like I do that are going through the same thing that I've never been able to share. And there's this whole community out there I didn't know about!” So, I had to wait a couple hours, but at nine o'clock I called the phone number of the PDSA, and Joan Young answered the phone. And I said, “My name's Barbara Pruitt and I found your website and I've had ITP since I was four!” And blah, blah, I mean, diarrhea of the mouth. I'm sorry that I was babbling on. And I said, “What can I do for you? How can I get involved?” Because these were my people.

Caroline:

Yeah. Yeah. And I always say that you can have a very understanding partner, spouse, parents, family members, friends. But it's not like meeting another person with ITP, right? You don't even have to say anything because you know that that person knows exactly what you're going through and what you're feeling. It's very, very powerful.

Barbara:

We're kindred spirits because our journey, we've walked in each other's shoes. Our journeys are similar. We know the trials and tribulations. And I tell people that are going to their first conference, and when I'm encouraging them to go to their first conference, I said, “You're going to walk away feeling like you got this big teddy bear hug, because you found your people, and you found people that know what you're going through. And that is so empowering when you're facing a disorder like this. You know, and whether it's this or something else, once you find somebody that's walked in your shoes, it just puts things into a better perspective that kind of keeps you from jumping off that cliff. You know, you just, it helps ground you. The other component of it is information. Whatever challenges, health challenges, you're facing in this lifetime, the better informed you are, the better educated you are, the better you're able to handle your disorder, your disease, disorder, whatever. And that's what the PDSA gives you. It gives you tremendous amount of support and information. All you have to do is ask, it's right there.

Caroline:

I remember when I was first diagnosed, I didn't know about PDSA, but my hematologist at the Cleveland Clinic said he had another patient who wanted to meet someone with ITP. And he said to me, “You're friendly. Would you want to meet her?” And I said, sure. And it was, her name was Barbara, Barbara Heiss. She was a school teacher, music teacher. She was in her 60s at the time and had ITP for, I think, around five years or so. And, so, she invited me to her home for some lunch, tea, I remember tea, and lunch, and dessert. So, I went over there, and we just clicked, spent a couple of hours talking. And then our hematologist, Alan Licton, Dr. Licton, said, “Well, why don't the two of you start a support group?” And at the time, I thought there were probably ITP support groups all across the country. So, we started this local support group in Cleveland, actually at one of the, you know, Cleveland Clinic satellite buildings. And the first two meetings, no one showed up. It was just the two of us. And I wanted to quit. I thought, oh, I don't have the time for this. I was working full time. I have this illness. I have young children. But Barbara would not let me, Barbara Heiss, would not let me give up. And, so, we actually changed the location to a more centralized location. I think that helped. And then we had several people show up, and this was in 2003 that we started. And then I found out, well, Barbara said to me, “You need to attend the ITP, the PDSA ITP conference.” So that was the first time I had ever heard of it.

Barbara:

Had she been to one?

Caroline:

She had been to one, and this was the one when it was taking place in Baltimore, I remember.

Barbara:

Yeah, I met her there, I met her in Baltimore. I think that not every nonprofit like the PDSA has someone at the head of it that has had the experience that their constituents, if you say, have had. It just adds such an important layer to the work that you do. And we know that you're speaking for our community when you meet people that can help our organization, meet other organizations that can help us. You're speaking from the heart, you're speaking from experience, and it's so much appreciated by all of us. We're happy where you are.

Caroline:

Yeah, I mean, thank you. It's very kind of you. But it truly takes a village, you know that. I mean, we are now an international nonprofit. I mean, we have such a wide reach, and we've really grown the organization, you know, over the past, we're in our 26th year now, you know, over the past 25 years. But when you look at the size of our staff, right? Our reach is real. We still have a relatively small staff. So, it's really, you know, our volunteers, our key volunteers, that are out there. You know, I mentioned starting the first local ITP support group. We have 62 local support groups now across the US and Canada. That's amazing. And all of the programs that we have, our national Walk/Run, ITP Awareness Month, but it's really because of our key volunteers. Our board members, people like you, Barb, and of course your husband, Peter, who he's been the board Chairman since I took over the leadership of PDSA, became Executive Director. We both have worked hand in hand over the the past 15 years. And I have, of course, a wonderful staff.

Barbara:

You sure do.

Caroline:

Yeah, who are just so dedicated, right, and hardworking. But I think to your point of, I think that having ITP myself has certainly served me very well, and served the organization, because I truly know what it's like. Even though, you know, I, like I said, I had it chronic for three years and went into remission. I still know what it's like to live with ITP, and to live with that fatigue and the anxiety of waiting for that call from the doctor as to what your platelet count is going to be that day. You know, the roller coaster of ITP, I know what it's like. And when I talk with our industry partners, or pharmaceutical companies, or researchers who are developing ITP treatments, and they want my input, I know what it's like to go through these treatments. So, I think that's certainly served me well over the years, but it's also, you know, just, my favorite word is serendipity. And I just think it was, it was meant to be. I loved my job as a radio and television producer, and could never see my, never could see, you know, my doing anything else. And this opportunity came along, and I didn't have any nonprofit experience, but 20 years in working in communications and marketing. And that's just when the internet was starting to explode in social media. And I would say about Joan Young, she was in the right place at the right time, because she had an IT background. And so, she built the organization as a discussion group, or as a forum, an online forum, as a way for people to connect with each other. And, you know, I took it from there, and it'll be interesting to see where we go in the next five or ten years.

Barbara:

It's exciting. The future looks bright, I mean, with a lot of things happening and being developed, and research, and everything, you know, onward and upward, right?

Caroline:

Yeah, I think there's a lot of, there's a lot of hope out there for ITP patients. And you know Barb, as you said, attending your first ITP conference as an adult, as a 40-something year old, you know, what would it have been like to attend as a child or a teen?

Barbara:

Yeah, it would have been over my head. I'm sure I wouldn't have understood it, and I would have been bored out of my mind. So, when they started the kids camp, I just was so thrilled to see that happening because, for the weekend, these children that live their lives being different, all these kids are the same. And they get to meet the other kids that have ITP. And they realize that, hey, they're not alone in here. And now with social media, they're able to connect with each other, which is great. And the same applies to the teen track that you all have at the conference because, again, they get to meet other teenagers that are going through this. And for the weekend, we're all normal because we're surrounded by people like us. So, we're all normal. And that's actually, it's a very good feeling.

Caroline:

Well, Barb, I think you and I could probably talk for another couple of hours. There's so much to cover. Maybe we'll have to do a conversation with Barb and Caroline part two, but this has just really been wonderful.

Barbara:

It has. Thank goodness we're getting kicked off here. So, I want everyone to look forward to the future podcast. They'll be listed on the PDSA website, and you'll be able to connect directly from the website to the podcast. And as we gather more and more podcasts, you'll be able to pick and choose the topics, because they'll be kind of listed in each of the episodes. So, if something really pertains to you, then you might want to click on that one. And, however, each podcast, I'm going to be inserting a little bit of wisdom from living with ITP, and, you know, my insights and wisdoms. And also lifestyle tips because there's a lot of things I've learned the hard way. Doing certain things that are second nature to everybody. And when you're diagnosed, you just continue doing those things. And then, you know, all of a sudden, it's like, oh, duh, I shouldn't be doing that. Hopefully, those little tips and stuff will be helpful to our ITP community.

Caroline:

Yeah.

Barbara:

So, we look forward to hearing from you all.

Caroline:

And it is our plan to have some of our medical experts on the show to answer questions, and to talk to PDSA staff, and some of our key volunteers, and other patients who would like to share their ITP journey with us. So, very exciting. But again, thanks for having me on your very first podcast episode and look for more in the future. More great conversations.

Barbara:

Thanks, Caroline.

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:

They say that most accidents happen at home. I'm sure that's pretty true. And the kitchen is a very likely place for that to happen. Being a person with low platelets, we are very cautious about cutting ourselves. And when you're in the kitchen using a knife, we need to be extra careful. Well, I've kind of come up with a solution for that. My husband bought me a fisherman's glove at a boating store. I think it was about 10 bucks. Anyways, what it is, is a chain mail type of a glove made out of, you know, some kind of metal with fabric of some sort. And it's, you can't cut through it. So, when you are chopping, or dicing, or slicing, you have the knife in one hand and the opposite hand you put this glove on, so that if you do slip with your knife, you're not going to cut yourself. This type of a glove is also very useful if you do any woodworking with any sharp tools, whether they're electric tools or not. It would be, you know, just one of those extra steps of precaution and safety that is good for all of us to be aware of. So, that is my lifestyle lesson for the day.

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 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.