Transcript
Speaker: I started out with a brochure and a conference. That grew into support groups. We've organized our one-day conferences in Canada. I was involved with the first conference in Australia, and now meeting policymakers that make a difference.
Speaker: If you'd have told me 15 years ago that I would go and facilitate a health conference on the other side of the world, I'd have thought you were nuts. PDSA has given me a voice that I never knew I had.
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 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.
Speaker: Here's your host for this episode, Barbara Pruitt.
Speaker: Hi there, and welcome to Bruised But Not Broken, Living with ITP. Today, I'm interviewing another ITP patient, and I know that's something that's really important to us as ITP patients. We like to hear everyone's stories because we're all different.
Speaker: And today, i have a friend from Cambridge, Ontario, Canada. His name is Dale Painter. He is a professional engineer in Canada and has 40 years of experience in design and review of water and wastewater treatment, serving design and infrastructure throughout Ontario.
Speaker: So welcome. Thank you, Barb. It's wonderful to be here. I'm glad you could join us today. And, you know, I've known you for probably 10 to 15 years, but I have to admit, i don't really know your ITP story. So I really appreciate you spending the time with us today and sharing that.
Speaker: So let's start at the beginning. Can you fill us in about when were you diagnosed and how were you told and what happened in those very early days for you and your family?
Speaker: Well, my journey began in, I was diagnosed in 2010 through a routine company medical a screening procedure that we have for my employer. So the blood work at that time had shown a low platelet count. And so I followed up with a family doctor and later a hematologist.
Speaker: This was in the spring of 2010. So by the end of the summer, we yeah contacted local hematologist, and the doctors there worked through possible and looked at other possible causes. And by October, the conclusion was that I, in fact, had ITP.
Speaker: Similar to most other patients, it's unsettling. The first time you hear of a condition is when you're told you have it. Right. And I'm sure you didn't know what ITP was, or did you?
Speaker: Not really, not at all. So... We didn't know what a low platelet count meant. What should we be doing? What shouldn't we be doing? and Is this temporary? Is it something long-term? We just obviously didn't know.
Speaker: Were they anxious to start you on treatment? um The first treatments that I had were the corticosteroids, dexamethasone, to see whether or not that would bring numbers up. At this point, I'm down between 30 and 40.
Speaker: You mean when you were diagnosed, you were between 30 and 40? Yep, with those numbers. We couldn't really trace back out of the annual medicals. They take a snapshot of everything you have at that point in time.
Speaker: Were my numbers high within the 150 to 450 and just gradually over the years? And then once i was below the 150, then it's a trigger.
Speaker: So there's no point trying to trace it back to, say, 150. one point in time, we don't know. Right. Were you having symptoms at the time? We really didn't note any symptoms. I did receive a couple of bruises in the spring playing hockey, but nothing that I considered to be, okay is this a trigger or is this abnormal? and And I would think most hockey players are covered with bruises.
Speaker: They can be, is absolutely. So... Yeah. So they tried dexamethasone. Did they do IVIG or prednisone also? Within probably two months after that, we started procedures with IVIG. My son and I were planning a trip and we thought, okay, this would bump numbers sufficiently to do that.
Speaker: But then shortly after that sort of became a regular routine that that was what was working for me was IVIGs. It was quite frequent in the first stages that I would probably have two infusions every three weeks. So it was quite intensive, may not be the right word, but quite frequent.
Speaker: I was very lucky that I had a yeah very understanding employer from the health and safety part of you. I would get blood work at 9 receive a phone call at 11.30. You're coming in for IV starting at 2.
Speaker: Not a problem. Away you go. Get her done. Wow, you really were fortunate because that can be a big obstacle. I've never had an issue with any of the treatment and care that I've received here in Ontario.
Speaker: Well, that's great because I know that's a big obstacle for a lot of patients with ITP. They have to take the time off from work and they can't afford to do that. And it makes it very difficult.
Speaker: Were there any big challenges that you faced when you were first diagnosed? Did it change your lifestyle? Did it affect your family? I mean, were there any other things that may have you may have felt?
Speaker: I think the biggest challenge was the uncertainty. I didn't have any symptoms, yet the blood test said something was wrong. We didn't know what.
Speaker: I'm trying to learn a blood condition or a rare condition most people have never heard of, and I'm trying to learn about it myself. I had to learn what to look for in symptoms, how to balance what I could and couldn't do. ho Hockey ended in the story right there.
Speaker: Things like that. But I could still work and live normally. And the anxiety around blood tests was something that was an issue as well.
Speaker: Okay, what's what's happening to me is, am I still declining even if I'm on these treatments? Which I wasn't. The blood test became of a frequency that we found the sweet spot of how how often to have IV treatments.
Speaker: So it wasn't a fear of the needle. It was a fear of the results of the test, right? Yeah. And okay, what else could we be doing? I did visit a naturopath that next spring to see whether there's anything that they could give me or treatment or procedures, not the right word, but some aspect that I could look at of whether it was a food condition or whether exposure to various um substances or your environment. Your environment and such, whether anything was triggered.
Speaker: So I was able to clean up a bunch of food allergies, but nothing but nothing that could make the platelets come up. So that was a win-loss, but that's okay. You had a little silver lining there for a moment anyways. Exactly.
Speaker: Now, I understand that you've also been a participant in some clinical trials through the years. Can you talk about that a little bit? over the years through the various treatments, as I say, we we we spent a a great deal of time with IVIG until we were able to look at other rituxan spinectomy and the TIPOs that I'm on now.
Speaker: But any opportunity that I found that I was able to do a clinical trial, not so much for what it would do for me, but A clinical trial can be successful for others. If I'm part of the, I'll call it bad data, of a the clinical trial, but it helps others, I'm okay with that because my doctor has always said, we'll just, we'll find it. We will keep trying.
Speaker: my My local hematologist would get frustrated that she couldn't, we couldn't find that answer per se, but I just said, we just keep trying. So it, it in fact, I was part of the TABALIS program clinical trials, which later got accepted.
Speaker: So being part of that, I'm able to contribute in that way. Barb, we've met so many other people that this is very debilitating. I'm lucky that it's not at that level with me.
Speaker: So to me, it's a matter about giving back and making things better for other people as well. Well, that's wonderful. It's a very altruistic part of you, Dale, which is very much appreciated because when it comes to clinical trials, you know, patients are needed.
Speaker: They need to get that data. They need to have other people experience that treatment to see how effective it is. And here you were in the Tavalees clinical trial, and I know that it's been very effective for multiple people.
Speaker: So kudos to you for doing that. Thank you. And it's hard The clinical trials are difficult based on so few people or numbers that we can that we get contributing. I've been on a second one probably a year ago with the people of at McMaster and Hamilton.
Speaker: And at one point, I was only one of two people in Canada that were eligible or qualified for that trial. And I don't know whether they were able to continue it based on low numbers all worldwide. So that's what also makes it difficult for the pharmaceutical companies and then researchers, because it's hard to get the data that will validate the use of this product, whether it's for us or for other patients with other autoimmune conditions. I'm finding A lot of the clinical trials are now for products that look at more than one autoimmune condition because they are all related.
Speaker: And the fortunate thing about ITP participating in a clinical trial is that they can at least use the barometer of a platelet count.
Speaker: And a lot of autoimmune diseases, they don't have like a barometer to use. It's just kind of How are you feeling? Are you feeling any better? you know, there's not like some way to score how they're doing.
Speaker: That's fortunately why we get a lot of opportunities to participate in clinical trials, because that platelet count is kind of their validation that yes, it's working or no, it's not working.
Speaker: It's part of our story, but as we've learned to recognize, the platelet count is one aspect of it. But you're right. It's an it's an absolute... physical, measurable barometer of exactly what they're their medications or treatments do for us and do for others.
Speaker: That's right. How did you find the PDSA? Because I know a lot of people, they spend a year or two or whatever before they stumble upon it. Did you find the PDSA pretty quickly with your diagnosis in 2010? Yeah.
Speaker: So, in fact, the very day that I was told or diagnosed with ITP, I had a support care worker came and provided me PDSA brochure.
Speaker: That is fabulous. I'm so happy to hear that. Absolutely. And I was at an appointment last week and we still have that shelf that talks about people having children with ITP, what to learn about ITP. So it's wonderful that that information is out there. I'd love to go around and make sure it's at more hospitals. Anyway.
Speaker: I wish it was at every hospital. but Absolutely. That's part of my, we'll call it my next mission, Barb. Okay. To get that out. so Okay.
Speaker: So then this was the fall of 2010, and I said, okay, I went online, learned about PDSA, and then found out that, okay, we have the the association has their annual conferences.
Speaker: So I said to my wife, okay, it was in Boston in 2010. I said, I'm going to go for the weekend and just see what this is all about. And as I've said to many people, it changes your life to be in a room with 200 other people that get what you have.
Speaker: Absolutely. That changed everything. so I came home, I said, Susan, you're coming with me next year. You have to meet my new family. Oh, how nice.
Speaker: It was a change. So the conferences and they give us the education. We can talk to experts in person and make these connections with people that are going through exactly what you are.
Speaker: So that was, it was life-changing whether their epiphany is the right word, but it it was, it made me feel you aren't alone. in person.
Speaker: so Because I know even for myself through all these years of going to conferences, like here, I've known you for 10 to 15 years, but I don't know your story because we have the same story, essentially. it's There's differences and nuances.
Speaker: We've all walked in each other's shoes. So there's this commonality, this brotherhood that we feel automatically with these other ITP patients. And it's a feeling of community. It's it's a wonderful feeling. You're not alone.
Speaker: And at the support group meetings that we've hosted over the years, if we have one person that comes in that has never met anybody, the meeting is a success.
Speaker: They don't feel alone. So it's it's very important to make these, as you say, community connections. You're part of this. You don't want to be part of it, but you're so glad that other people are here for you.
Speaker: It changes your outlook. It does. And so you and Susan have been the facilitators for a support group, correct? Yes, we have. How did that get started? How did you decide to do that?
Speaker: At the conferences, you understand how important it is to talk to someone who has this and what it was like. I got a hold of the the staff at the time and said, what does it take to set up a local support group?
Speaker: So in 2012, we started just a small group where put out notices and to ah meetings in our area. And that's grown into scheduling. We have two or three meetings.
Speaker: in-person meetings a year, in community centres, libraries. Yes, we've had them in halls at hockey rinks in Canada. Okay. do they Absolutely.
Speaker: So we're about an hour west of Toronto. I've taken this show on the road. Let's go to this library today. We'll go to a community out here or a suburb here. So like the conferences, like the conferences we'll move around. We'll come to you. We want to make it easy for you to get the information you want and need to hear.
Speaker: That's wonderful. With moving around like that, Dale, you're able to reach so many more people that aren't necessarily willing to travel an hour or so. That's terrific. That's wonderful. Now, do you do teleconferences also in Canada, I hear?
Speaker: Actually, last night, we did have our Canadian teleconference, one of our Canadian teleconference meetings. um Some, a couple of people local do schedule teleconference monthly.
Speaker: And we get together that way as well. That obviously came out of out of the pandemic. and And as we've all seen in this situation, it wasn't the best way, but it was a wonderful way to not only keep communicating, but to be able to communicate with others that can't travel and such. So that's obviously something that needs to continue and will continue that this is this is the way to do this.
Speaker: it's It's a very effective way to be able to do that. I know if you live in like a rural area or an area where there isn't a support group um that's easily accessible to you, you can call the PDSA office and they can give you the information to join in ah teleconference support group, which is a great opportunity for people that, like I said, might be in a very rural area.
Speaker: Even across the country, like ours is defined as a Southwest Ontario group. But we have people from Manitoba and British Columbia that still come on those meetings. That's great. There are no borders with this. ITP doesn't care where you are or anything about you. It's not selective at all.
Speaker: Not at all. Doesn't care how old you are, how young you are, whether you're a male or female, doesn't matter. It's not picky about that. Now, you've attended how many conferences now?
Speaker: I'm up to a dozen now, Barb. Okay. We've missed the last couple and I'll be frank, we miss our family. We do. ah We do. We miss seeing you there if you're not there. You know, you've always been ah somebody that I've always seen there and say, hey, Dale, how are you? Hi, Susan. How are you doing?
Speaker: And that's the point. The conferences are reunions. They really are. They are. And in a lot of ways, I've made so many good friends through the conferences through the years. And probably like you, people give you a call just to check in or if they have a question, they know you might have the answer. So you make yourself available, which is great.
Speaker: What has stood out to you the most when you think about going to the conference? I know you said it's like enriched your life. It's been great. But is there anything in particular at any of the conferences that really stood out for you? Generally,
Speaker: The fact that the presenters and the researchers are so approachable, it's not like they're up there talking behind a glass.
Speaker: They're involved with the day-to-day. They have genuine care for the people that they are helping and the and the research they're doing and who this helps. And I think those of us that attended a lot of these conferences feel very comfortable talking to these world-renowned researchers in person. Hello, and they they know who you are, you know who they are, and they ask how you're doing. And we talked about this a couple years ago, and how's that going? So that's the amazing part of this. It's it's not, ah as I say, a presentation behind the glass.
Speaker: It's getting to meet the people. And that's the biggest thing about this that's so amazing. We are very fortunate to have access to and contributions from some of the best researchers in the world.
Speaker: Absolutely. And if you ask them, I understand that so many of them say it's the highlight of their year. because they get to communicate not only with their colleagues, but with the patients. And they really enjoy that. And you can tell that when you talk to them.
Speaker: You know, they want to know, well, what's your story? now Now, have you tried this? Have you tried that? Now, what did that lab report show? And, you know, they're very accessible. They're real people. They're not, you know, they're not up on some pedestal that you can't approach them.
Speaker: And like any researcher or any work you do, You want to see that your work is making a difference. And it is. And that's, I think, what they get out of it, Bart, is, yeah, I'm i'm making a difference.
Speaker: In all these people's lives, absolutely, which is wonderful. Now, you've served on the PDSA's board of directors now for quite a few years.
Speaker: How did that all come about? It was probably the second or third year that I was part of the association. Caroline approached me at a conference and asked whether I was interested in possibly being on the board. And i first thought, okay, this is this is not something I pictured myself doing.
Speaker: i'd work with nonprofit associations here in Canada, but This gave me an opportunity to learn, listen, and what experience do I have that I can bring to the table?
Speaker: Over time, I became i able to understand how ah major nonprofit works in education, the research, and the advocacy, all ah all of the things that we do, and and the long-term planning of the association.
Speaker: PDSA has grown exponentially in the 15 years I've been involved. And just the involvement of pharmaceuticals and and other companies who are interested in what we do has been amazing. And I wanted to learn, and not being self-centered here, but how can we apply what this is doing, how the American health system works, and how to how to make those contacts, how can we do that in Canada as well?
Speaker: So it gave me a bigger idea of how these work and, as I say, how to contribute to the growth and future of of what we do.
Speaker: I think, you know, you've been on the patient advocacy board and you've done a lot of work in Canada um regarding the access to treatment for patients. So I congratulate you for that. i mean, that's fabulous what you have done. so Explain a little bit about that, because people aren't aware of um what you and others have done in Canada specifically.
Speaker: This is something I've wanted to be able to do for a decade or so. that okay The next step beyond talking to the doctors and the medical community who know this is to get in front of the legislature and the politicians, the people that are in charge of the purse strings.
Speaker: Access to medications in Canada is a little different than what it is in the US. You know, universal health care doesn't mean universal everything's paid for, everything's covered.
Speaker: There are rules with respect to TIPO and second line treatments that you have to have, for example, where I'm in Ontario. You have to have had steroids. You've had to try IVIG. You've had to have a spinectomy before you're eligible through the public system to have some of these medications covered.
Speaker: So with the help of PDSA, we were actually able to set up a meeting a year ago with the members in in Queens Park, which is the Ontario legislature, equivalent to the state legislature, that level.
Speaker: Okay. And we were able to meet with... um The Minister of Health, the the people in opposition, we'll call them, and and our own our own local representatives to say also from a bit of a financial approach, Barb, clearly it was important to be able to get the best or as many options available because there's so many different where every patient is different.
Speaker: you know Financing or paying for IVIG is different than getting financing for Ultramopeg and this type of thing. So the more expensive medications are are covered. For example, in Ontario, IVIG is.
Speaker: But at the quantities and the amounts i was, for lack of better term, are consuming right early on Okay, the medications I'm now on the cost of that is well below what I am. Now, I i' i can't use myself as ah as a specific example of the higher cost, but there's that aspect to it. And the politicians actually like to hear that.
Speaker: Oh, because what happens is, both in Canada and the US, information like this is buried in an omnibus bill or a document that's three inches thick. There's no possible way they can read everything and every line and about this. So,
Speaker: They're interested if you're going to save them money. If you're going to save them money, they want to listen. Absolutely. and And we're not saying we need to be at the front of the line and that, but looking at the big picture for all autoimmune conditions or these treatments. So if you add up all the rare conditions, a lot of people have them and such. So it was very encouraging that we met with with meeting with these people They were listening. In fact, within a couple of months after that meeting we had in the summer, the Canadian Drug Agency actually included remiscipline and L-Tramopeg on there, recommended that these could be done before a splenectomy.
Speaker: So getting out is making a difference a little bit at a time. But life-changing may not be the right word, but it's moved the goalposts for us.
Speaker: Absolutely. So you actually, from what you did, you were saving some people from having a splenectomy in a lot of ways. The Canadian Drug Agency that oversees through Canada has recommended but yes, we would consider coverage for these or recommend that these treatments be looked at in advance of splenectomies.
Speaker: it's It's still up to the individual provinces because they're assigned their pot of money from the feds. They can decide what they want to cover.
Speaker: in each province. That's why it's different in Alberta versus Quebec versus British Columbia. I'm on ah many, many phone calls, like the teleconferences and online meetings that, oh, I used to be able to get that when I lived in Quebec, but now I can't because I've moved to BC.
Speaker: Oh boy. So we're trying to work at the provincial level But now I want to get to the next level and make sure that the playing field is level across Canada.
Speaker: I'm starting to do some work with Canadian agencies. I don't say it was a result of our meeting with the politicians, but coincidentally, the Canadian drug agency last fall issued a report stating that they recommended second-line therapies such as El Trombopag, Endplate, now be...
Speaker: approved ahead of having a spinectomy. So they've made the the recommendation. It's still up to the individual provinces whether they want to implement that.
Speaker: Each province receives their health funding from the federal government. They all get their pot of money. One province might decide we're going to cover IV. Another province says we're going to help with rituxan.
Speaker: They all have an individual. So i've I've been on telephone calls and conference meetings that I used to live in Quebec. That was covered, but I moved to Alberta and it's not.
Speaker: So working with some of the national agencies, I want to help level the playing field. So that's a national standard. They refer to it as postal code medicine.
Speaker: That's got to end. Wow. Yeah, it depends on where you lived as far as what kind of access you have. What kind of access? As you know, Barb, it's a functional, like your treatment is a function of your coverage, whether it's private or public. And it's it's just another thing that adds to our anxiety.
Speaker: Right. Absolutely. And actually, in Canada and the U.S., we're more fortunate than in some countries that they don't even have the treatments available in their country, period.
Speaker: So we have options, which is wonderful. I know that the American Society of Hematology has their guidelines that they publish periodically and update them. So I'm sure that's something that the health ministers in Canada would look at.
Speaker: But aside from that, I know you and I were both recently on a committee with Dr. Donnie Arnold at McMaster, and we were... patient representatives on a committee that developed the guidelines for the emergency treatment and care of patients with ITP.
Speaker: How do you feel about participating with that, Dale? I think that was wonderful that we were invited to be part of that, Barb. and researchers, I'm finding more and more researchers and the pharmaceutical companies take our contributions seriously.
Speaker: That's been a huge change for us, that our voices are making a difference. We were able to help shape in that particular study, which was for procedures or policies when you come to an emergency room.
Speaker: They felt it was very important to hear, what are we looking for when we come through the front door? I come in with something i need to be able to convey my story or my situation to them that they understand, okay, now we do this.
Speaker: I think we sort of helped to to shape the discussions or the results from it that, yeah, this is what they're looking for. Not so much, we're not driving the bus, but we're not a passenger at the back.
Speaker: Right. No, they listened to us. They really did. And actually in our meetings, which were by Zoom, they asked, you know, our opinion. Well, what do you think about this? Have you had any experience with that? Have you been in you know, in an emergency room and what happened.
Speaker: Because the rest of the committee, they were all physicians, hematologists, emergency room doctors, emergency room nurses. They had a plethora of people on that committee.
Speaker: And there were like maybe four of us that were patient representatives, I think. I think so. Yes. Yes, it was encouraging that they listened and that they heard our voices. And actually, I've spoken to other doctors, you know, hematologists and researchers that say they really do value the patient input.
Speaker: And like you said, I'm so glad that that's part of the discussion now is what's the patient's feeling? And for pharmaceutical companies, if they're trying to look for something to solve A and B, but our main concern is C,
Speaker: now they're listening to us. So that's really good. It's better for our community. You and I have been on patient advisory meetings at the conference, in and around the conferences where we've met with pharmaceutical companies and they've asked us even a question like, would you like a needle?
Speaker: Would you like a pill? How often would you like to take it? They're realizing it's great to have a product, but if it diminishes quality of life, maybe that's that that's an aspect too. It's Once again, more than just the numbers. How do we make a difference? If it's something that I have to go three hours to a hospital because it's only in one of the major cities to be able to get this treatment in terms of and a needle, but I can have a pill shipped out to you.
Speaker: Great. Let's do that. And a lot of that is very personal and patients also need to communicate that with their doctor because the doctor might feel, you know, they their hematologist might feel like, okay, well, this isn't working. Now we're going to go to plan B and maybe plan B doesn't fit with their lifestyle and plan C would be a better option. So that's part of being an advocate for yourself. You have to make sure you're communicating.
Speaker: And that's part of the doing your own education. Not only an advocate for others, but an advocate for yourself. I found so many times after coming home from a conference, learning new new items, I was almost afraid to talk to my hematologist because I just found out about this new and this and that.
Speaker: I was lucky. My hematologist has been so receptive on, let's find let's go and find you this. Let's get this. um The clinical trials. If you can get on a trial,
Speaker: Go. Absolutely. I was very lucky that she is an acquaintance and has worked with, port I've been very lucky that she works with Don Arnold. The two of them, like, it's great that they work together. And I found, I've been lucky to find two hematologists that agree.
Speaker: We've heard so many stories of, you know, don't go to another one, or this is what we do. And the struggle I've seen is because we're such a small group, I'm going to use the word clientele of a hematologist. It's so difficult for your hematologist to keep up with everything. Right. It's very true.
Speaker: And so we do need to, without being pushy or being aggressive, but say this is what else other information is there. Is it possible that this could be an option?
Speaker: And more often than not, they will be receptive. As I say, I've been lucky how involved and proactive my hematologists and their team have been since day one. Here's a brochure.
Speaker: That's terrific. That's the way we hope it would be with every hematologist. And everyone's journey, you would hope, would be that supportive. Simple. Yeah, exactly. We have enough roadblocks. We don't need more. All right. I know you're blessed with a hematologist that asks you about what did you learn? and And my hematologist is the same. When I come home from the conference, it's like, okay, so tell me what's the latest?
Speaker: What did you learn? What does so-and-so say? you know and And he's familiar with a lot of the doctors you know that are on our medical advisory board and the doctors that are coming to speak, which is terrific.
Speaker: Absolutely. You are considered a dedicated ITP awareness champion. And I did see a picture of you on the PDSA Facebook page.
Speaker: You dyed your hair purple, Dale. what's What's going on here? It's all about getting the word out, getting discussion started.
Speaker: It was an idea that grew out of You are our September awareness month. Okay. So how else do we raise the bar? What else can we do to I don't want to say get the word out, but get people talking. So, you know, purple clothing is one thing.
Speaker: Purple hair is difficult to ignore. So we have a fundraiser at my office every year. i have a day. There's dozens and dozens of people that wear purple and they talk to me about purple day every year. When's purple day coming up? And it's like, good.
Speaker: You're talking about it. So I just, okay, let's, as I say, raise the bar and I just put it out as a challenge as a fundraiser. If we got to a certain amount, I would do this.
Speaker: Oh, no kidding. That's how it came about. I work with engineers and technical people and they made it very clear to me that this was going to happen. Yeah.
Speaker: I threw out the challenge. It was accepted before I finished it. You know, their enthusiasm, I knew I was committed. The response was terrific. I had it for probably a month, but friends and colleagues and complete strangers are coming and talk to you and giving me an opening to explain and PDSA.
Speaker: and pdsa There's laughter. There's looks. But that was the point. If looking unusual for a while starts a genuine conversation about a rare blood disorder, I'll be your poster guy.
Speaker: i don't care. Let's do it. Get the word out. Good for you. You need to see if other people will join in and dye their hair purple, you know. that's the next step. Like I know we've seen, yeah that this was just, this would be something that not many would have seen. I'm, I'm 60, somebody, I know a 64 year old male doing this.
Speaker: What's up with that? Well, also with short hair in a month's time, it probably grew out. ah It was there for a bit. Yeah. Yeah. Well, like you said, it starts the conversation. And I know from my own personal experience, when I didn't share that I had ITP and didn't really talk about it because I was kind of ignoring it.
Speaker: I never heard of anybody else with ITP. But once I went to my first PDSA conference and got hooked in, I started preaching about ITP and more people out of the woodwork.
Speaker: you know, I would hear from, you know, other people with ITP and people were calling me. And it's amazing how when you talk about it, the word really does get out. And like your coworkers probably know ITP.
Speaker: And if they run into somebody that, oh, so-and-so's, you know, has a blood disease of some sort. Oh, what is it? ITP. Oh, I know who you need to talk to. Have people come to you that way?
Speaker: Well, I found the first couple of years, I would have co-workers come to me and my sister has that, or my my neighbor or my cousin while she was expecting.
Speaker: Okay, so it's you talk about it, but as soon as you realize there's more and more people that experience what we are, okay, let's make these connections.
Speaker: So that's getting the word out. I don't go around and say, I have ITP and I'm proud of it, but I'm part of a community that's out there. We want to meet you. We want to help you.
Speaker: That's what it's about. That's wonderful. And you are such a great ambassador for that. You really are. And you've done so much for the PDSA. What what would you say to somebody that's kind of sitting on the sidelines and thinking about, well, first of all,
Speaker: Maybe I want to go to a support group. Maybe I don't. what How would you encourage them? Start small. You don't have to be a board member three years in.
Speaker: You don't have to organize a major event. You don't have to know everything about ITP to make a difference. Start with what's manageable. Attend the support group meeting, online or in person.
Speaker: There's two functions to them. Meeting people online, even last night in our in our meeting. there was fe like There was two people in Vancouver that had never met another patient.
Speaker: Get together. Meet for coffee. Do that. That's what you need. We had another lady in our Ontario group that spoke to ladies in Manitoba, in win in the Winnipeg area.
Speaker: They've got together and made a wonderful friendship. Even to sit and talk in the Tim Hortons. Away we go. It's great. Yeah. Attend a meeting, volunteer at the at the events, join a walk. We need to have more of these across Canada.
Speaker: We're spread out. I'm hearing so many more people that are two or three in the community. Let's get together. um Donate if you can. The money here is not back deductible per se, but I make sure that I let people know the money we raise in Canada goes to our research groups and our the the work that's being done in Canada for this. And we the McMaster team is a wonderful group, and they're all so approachable. but you know We do contribute to the work they do.
Speaker: And even the study that we did, that we helped them with the the the emergency management, PDSA contributes money to researchers to start these things. So it's important to be able to do that.
Speaker: Or you just talk to a person and and as you say, talking to a person on the street. Ironically, last week at my hematologist appointment, another support care worker happened to come in, like they'll come in and do your blood and then you talk to your doctor.
Speaker: I had a shirt. I wore my shirt that they said pump it up for platelets. And she said to me, my daughter has that condition. Just talking about it in person or i wear it to a grocery store and people give me a thumbs up.
Speaker: It's just under the surface. Let's bring it up. Let's get that out. Well, awareness is a big part of it. Awareness is really a big part of it, but people can start small. They don't need to be fully immersed, you know, do what's comfortable for you.
Speaker: I started out with a brochure and a conference that grew into support groups. We've organized our one-day conferences in Canada. I was involved with the first conference in Australia, and now meeting policymakers that make a difference.
Speaker: If you'd have told me 15 years ago that I would go and facilitate a health conference on the other side of the world, I'd have thought you were nuts. PDSA has given me a voice that I never knew I had.
Speaker: and That's great. And you've used that voice, which is wonderful. I'm proud of you, Dale. You've come so far and you've done so much for the organization and for the community. It's all about helping others and helping our communities.
Speaker: We're all in this together. Let's make it as comfortable as we can for as many as we can. Right. Well, I think we've covered an awful lot of ground here. And I personally am thankful for you and all the hard work you do for the organization and for the ITP community, because we need more people like you that have a passion for it. And you don't know that you're born with this passion until you're faced with this, right?
Speaker: Absolutely. If you're put into the corner, you step up. All of the work that you're doing with these podcasts and Peter and I have been on the board together for well over a dozen years. And it's important that people like yourselves and and the people we work with and our staff are all here to contribute and and make a difference. So thank you for everything that you do, Barb.
Speaker: Thank you. And I really appreciate you sharing your story with us today because I know that patients really want to hear trials and tribulations maybe that other people have gone through that they're not alone in their own struggles. So I think it's an important thing for us to share on this podcast. And one last question.
Speaker: Are you going to have purple hair this year? We are still on the fence. The timing is I've debated whether I do it as after everybody's contributed or do it at the beginning of September.
Speaker: It was fun. It started conversation and gave people something to associate with it. I don't promise it every year, but I'm not ruling it out. That sounds like a politician not saying yes or no, doesn't it? I know. I know it kind of does. But maybe you could have more people join you too. Who knows?
Speaker: That would be the next step for sure. That would be a great picture. I'd love to see that if you do it. Well, thank you again, Dale. This has been a pleasure for me personally to talk to you again. I haven't seen you in a couple of years and you look fabulous.
Speaker: Thank you so much. Yes, this has been wonderful.
Speaker: 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.
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.
Speaker: When you have ITP, you search for a treatment that will work for you. It's trial and error. Some work, some don't. Some treatments stop working after a while.
Speaker: I know, I've been there. To say it's frustrating is putting it mildly. Let me give you some very important advice. Before you start any new treatment, I want you to document exactly how you feel and all the symptoms you are having.
Speaker: Are you bruising? do you have petechiae? If so, how much? You might even want to take a few photos. Are you fatigued, anxious, depressed?
Speaker: You might even want to include some examples. also includes your current platelet count. Now why should you do this? Well, it will help you evaluate if your new treatment is helping you.
Speaker: Sometimes improvements can be very subtle. Sometimes treatments take time to work. At least you'll have something to refer to and compare your so current status.
Speaker: This is important to do whether you are starting a new medication or even a supplement like vitamin papaya leaf extract, whatever it is.
Speaker: You need to be able to compare the before and after. i started a TPO about five years ago and was really disappointed that my platelet count did not go up.
Speaker: But you know what? my bruising and petechiae were a lot less. Even though the medicine didn't raise my platelet count on paper, it was working for me.
Speaker: My insurance company wanted to see my lab work, and because there was no change in my platelet count, they didn't want to pay for the medication.
Speaker: Well, my hematologist went to bat for me. he had a peer-to-peer conversation with the insurance company's doctor and and told him how it was working for me in ways that could not be measured.
Speaker: Needless to say, I'm still on that TPO five years later. So be sure to document your symptoms. Even better, keep a medical diary on yourself.
Speaker: If you've got chronic ITP, It's hard to remember all the details of your treatments. You might even find a pattern. Maybe you'll notice that your platelet count goes up after you've had a cold or that it goes down.
Speaker: It can only help you to keep track of these details. Well, that's it for now. I hope you'll join me next time on Bruised But Not Broken, Living with ITP.
Speaker: Until then, wishing you lots of happy, healthy platelets. Thanks for listening to the PDSA podcast, Bruised But Not Broken, Living with ITP.
Speaker: Made possible by our presenting sponsors, Amgen and Sanofi. Special thanks to Gus Majorga for composing our theme music.
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.
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.
Speaker: Remember, you are not alone.
