Dale Paynter

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. 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.

Narrator

Welcome to the PDSA podcast, Bruised but Not Broken: Living with ITP. The diagnosis of a bleeding disorder like immune thrombocytopenia may leave you wondering, how can I really live my life with ITP? PDSA's podcast, Bruised but Not Broken: Living with ITP, brings empowering stories, the latest research and treatment updates, lifestyle tips, and answers to the real life questions the ITP community is asking. Here’s your host for this episode, Barbara Pruitt.   

Barbara Pruitt

Hey 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. and Today I have um a friend From Cambridge, Ontario, Canada. His name is Dale Paynter. 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. So welcome.

Dale Paynter

Thank you, Barb. It's wonderful to be here.

Barbara Pruitt

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. 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.

Dale Paynter

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. This was in the spring of 2010 so by the end of the summer, we contacted local hematologists and the doctors there worked through possible and looked at other possible causes and by October the conclusion was that the, in fact, had ITP. So similar to most other patients, it's unsettling the first time you hear of a condition is when you're told you have it.

Barbara Pruitt

And I'm sure you didn't know what ITP was or did you?

Dale Paynter

Not really, not at all. We didn't know what a low platelet count meant. What should we be doing? What shouldn't we be doing? Is this temporary? Is it something long-term? We just... obviously didn't know.

Barbara Pruitt

Were they anxious to start you on treatment?

Dale Paynter

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.

Barbara Pruitt

You mean it at that point? You mean when you were diagnosed, you were between 30 and 40?

Dale Paynter

Yeah. With those with those numbers. We couldn't really back out of the annual medicals. Can you take a snapshot of your of everything you have at that point in time. What were my numbers? high within the 150 to 450 or and just gradually over the years. And then once I was below the 150, then it's a trigger. So there's no point trying to trace it back to say one point in time, we don't know.

Barbara Pruitt

Right. Right. Were you having symptoms at the time?

Dale Paynter

Nothing. No, 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, this is this a trigger or is this abnormal?

Barbara Pruitt

And I would think most hockey players are covered with bruises.

Dale Paynter

They can be, as absolutely. so

Barbara Pruitt

So, they tried dexamethasone. Did they do IVIG or prednisone also?

Dale Paynter

Within probably two months after that we started on the; I started procedures with IVIG. My son and I were planning a trip. And we thought, okay, this would bump numbers sufficiently to do that. But then that Shortly after that sort of became a regular routine that that was what was working for me was IVIG. So, it was quite frequent in the in the first stages that i would probably have two infusions every three weeks, so it was quite a lot quite Intensive may not be the right word, but quite frequent. I was very lucky that I had a very understanding employer from the health and safety part of you, I would get I would get blood work at 9 am, receive a phone call at 11:30, you're coming in for IV starting at 2. Not a problem. Away you go. Get her done.

Barbara Pruitt

Wow, you really were fortunate because that can be a big obstacle.

Dale Paynter

Absolutely, I was. I've never had an issue with any of the treatment and care that I've received here. here in Ontario

Barbara Pruitt

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. 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?

Dale Paynter

I think the biggest challenge was the uncertainty. You know, I didn't I didn't have any symptoms, yet the blood test said something was wrong. We didn't know what 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. End of story, right there. 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. Okay what happening to me? All right, now it is. Am I still declining even if I'm on these treatments? Which I wasn't. But the blood the blood test became of a frequency that we found the sweet spot of how often they have IV treatments.

Barbara Pruitt

And so, it wasn't a fear of the needle, it was a fear of the results of the test, right?

Dale Paynter

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 proceed; procedure is not the right word. But some aspect that I could look at of whether it was a food condition or whether exposure to various

substances or things in your environment and such, whether anything was triggered. So, I was able to clean up a bunch of food allergies, but nothing that could make the platelets come up. That was a win-loss, but that's okay.

Barbara Pruitt

You had a little silver lining there for a moment anyways.

Dale Paynter

Exactly, exactly.

Barbara Pruitt

Yeah. 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?

Dale Paynter

Yeah, over the years through the various treatments, as I say, we spent a great deal of time with IVIG until we were able to look at other Mertuxan splenectomy. and the T-pose that I'm on now. 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... whether you know A clinical trial can be successful for others. If I'm part of the; I'll call it bad data of the clinical trial, but it helps others. I'm okay with that. because my doctors have always said we'll just We'll find it. We will keep trying. 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 in fact, I was part of the tables; clinical trials which later got accepted. 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 I'm lucky that it's not. at that level with me. So, to me, it's a matter about giving back. and making it better. Making things better for other people as well.

Barbara Pruitt

Well, that's wonderful. It's a very altruistic, you know part of you Dale which is very much appreciated because when it comes to clinical trials, you know patients are needed. You know 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 tablis clinical trial and I know that it's been very effective for multiple people. So, kudos to you for doing that.

Dale Paynter

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 with the people at McMaster and Hamilton. And at one point, I was only one of two people in Canada that were eligible or qualified for that. for that for that trial and I don't know whether they were able to continue it based on low numbers all or all worldwide. So that's what also makes it difficult for the pharmaceutical companies. And then researchers; because there's; it's hard to get the data. That that'll 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.

Barbara Pruitt

And the fortunate thing about ITP; participating in a clinical trial is that they can at least use the barometer. of a platelet count. 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. So that's why that's fortunately why we get a lot of opportunities to participate in clinical trials because that platelet count is kind of there. validation that yes, it's working or no, it's not working.

Dale Paynter

And It's part of our story, but as we've learned to recognize the platelet count is one aspect of it.

Barbara Pruitt

Absolutely.

Dale Paynter

But you're right, it's an absolute physical measurable barometer of exactly what their; what they their medications or treatments do for us. and do for others.

Barbara Pruitt

That's right. 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? 2010?

Dale Paynter

In fact, the very day that I was told or diagnosed with ITP, I had a support care worker came and provided me a PDSA brochure.

Barbara Pruitt

That is fabulous. I'm so happy to hear that.

Dale Paynter

Absolutely. And I was at a 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 but that information is out there.

I'd love to go around and make sure it's at more hospitals. Anyway.

Barbara Pruitt

I wish it was at every hospital but you know.

Dale Paynter

Absolutely that part of my; We'll call it my next mission, Barb. to get ah to get that out 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 association has their annual conferences. 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. That that that changed everything, so I came home, I said, Susan, you're coming with me next year. You have to you have to meet my new family.

Barbara Pruitt

Oh how nice.

Dale Paynter

It was It was a change. The conferences and that you know 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.

So that was I don't want to say the word the it was life-changing whether epiphany is the right word, but it was.

Barbara Pruitt

Very enlightening for you.

Dale Paynter

It made me feel. You aren't alone in person.

Barbara Pruitt

Absolutely. Yeah. 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. 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 a wonderful feeling. You're not alone.

Dale Paynter

No, 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. That. The meeting is a success. They don't feel alone. So, 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 you you're so glad that other people are here for you. And it changes your outlook.

Barbara Pruitt

Right. Right. It does. And so, you and Susan have been. The facilitators for a support group, correct?

Dale Paynter

Yes, we have.

Barbara Pruitt

How did that get started? How did you decide to do that?

Dale Paynter

So, at the conferences you understand how important it is to talk to someone who has this and what it was like so I got a hold of the staff at the time and said, what does it take to set up a local support group? So, in 2012, we started just a small group where put out notices and to our meetings in our area.

And that's grown into scheduling. We have two or three. in-person meetings a year; in community centers, libraries. Yes, we've had them in halls at hockey rinks in Canada. Absolutely. So we're about an hour west of Toronto, so 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.

Barbara Pruitt

Well, that's wonderful because you're 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. So that's terrific.

Dale Paynter

Absolutely.

Barbara Pruitt

That's wonderful. Now, do you do teleconferences also? in in Canada. I hear.

Dale Paynter

Actually last night we did have our Canadian teleconference one of our Canadian teleconference meetings. A couple of people, local, do schedule a teleconference monthly. And we get together that way as well. That obviously came out of... out of the pandemic and as we've all seen. That was in this situation It wasn't the best way, but it was a wonderful way to keep... to not only keep communicating, but to be able to communicate with others that can't travel and such. So that that that's obviously something that needs to continue and will continue, that this is the way to do this. And it's a very effective way to be able to do that

Barbara Pruitt

And I know if you live in like a rural area or an area where there isn't a support group. that's easily accessible to you, you can call the PDSA office, and they can give you the information to join in teleconference support group which is a great opportunity for people that like I said, might be in a very rural area. So that's terrific.

Dale Paynter

Even across the country, like ours is defined as a Southwest Ontario group. But we have people that we have people from and British Columbia that still come on those meetings. There are no borders with this. ITP doesn't care where you are or anything about you. It's not selective at all.

Barbara Pruitt

It. Not at all. Doesn't care how old you are, how young you are, whether you're a male or female, doesn't matter; doesn't is not picky about that.

Dale Paynter

Doesn't matter.

Barbara Pruitt

Now, you've attended how many conferences now?

Dale Paynter

I’m up to a dozen now, Barb. We've missed the last couple and I'll be frank, we miss our family. We do.

Barbara Pruitt

We miss seeing you there if you're not there. You've always been somebody that I've always seen there and say, hey, Dale, how are you? Hi, Susan, how are you doing?

Dale Paynter

Absolutely. And that's the point. The conferences are reunions. They really are.

Barbara Pruitt

Yeah. 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. I was gonna say what has stood out to you the most when you think about going to the conference. and 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?

Dale Paynter

Generally, the fact that the presenters and the researchers are so approachable. It's not like they're up there talking behind a glass. 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. 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 know who you are you know who they are and how they ask how you're doing and we talked about this a couple years ago and how's that going so there that's the amazing part of this. It's not a; as I say, a presentation behind the glass. 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.

Barbara Pruitt

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, 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.

Dale Paynter

Oh, and they like; 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, Barb. I'm making a difference.

Barbara Pruitt

And 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. How did that all come about?

Dale Paynter

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. I work with non-profit 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? Over time, I became I’ve used able to understand how a major nonprofit works in education, the research and the advocacy, all of the things that we do and the long-term planning of the association. PDSA has grown exponentially. in the 15 years I've been involved. and just the involvement of pharmaceuticals and other companies who are interested in what we do. It's been amazing. and I wanted to learn, and not being self-centered here, but how can we apply? them 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? So, it gave me a bigger idea of how these work. And as I say, how to contribute. to the growth in future of what we do.

Barbara Pruitt

Well... and I think you know you've been on the patient advice. advocacy board. and you've done a lot of work in Canada. 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. what you and others have done in in Canada specifically.

Dale Paynter

Well... 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. Access to medications in Canada is a little different than what it is in the U .S. you know, universal health care doesn't mean universal everything's paid for, everything's covered. There are rules with respect to TPO and second line treatments that you have to have. for an example, where I'm in Ontario. You have to have had steroids. You've had to try IVIG. You've had to have a splenectomy before you're eligible through the public system to have some of these medications covered. So with the help of PDSA, we were actually able to set up a meeting a year ago with the members in in Queen's Park, which is the Ontario legislature, equivalent to the state legislature, that level. And we were able to meet with the minister of health; the people in opposition will call them and our own local representatives to say also from a bit of a financial approach Barb. Clearly it was important to get 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. you know financing IVIG financing or paying for IVIG is different than getting financing for LTrombopag and this type of thing, so the fact and we were. We have we have some of the more expensive medications are covered for example in Ontario IVIG is but of the quantities and the amounts, I was for lack of better term, Barb, consuming.

Barbara Pruitt

Right? Right?

Dale Paynter

Early on. Okay, the medications I'm now on are; the cost of that is well below what I am. Now, I can't use myself as a specific example of the higher cost but there's that aspect to it, and the politicians actually like to hear that because what happens is both in Canada and the US. This is buried in 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, the response is that they're interested.

Barbara Pruitt

They're interested if you're going to save them money. If you're going to save them money, they want to listen.

Dale Paynter

And good. Absolutely. 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. 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 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 Eltromopeg on there. The recommended that these could be done before a splenectomy so getting out is making a difference. It's you know a little a little bit at a time. But that's well Life-changing may not be the right word, but it moves the goalposts for us.

Barbara Pruitt

Absolutely. So, you actually from what you did you were saving some people from having a splenectomy in a lot of ways.

Dale Paynter

They they've said 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 splenectomy. 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. 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 kind 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. 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. So, I want to do 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. sent issued a report stating that they recommended Second line therapies. such as El Trombopag, Nplate now be approved ahead of having a splenectomy. So, they've made the recommendation. It's still up to the individual provinces whether to; they want to implement 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 IVIG. Another province says we're going to help with Rituxan.

They all have an individual, so I’ve been on telephone calls and conference meetings that... I used to live in Quebec. That was covered, but I've moved to Alberta, and it's not. So, working with some of the national agencies. I want to help level the playing field so that's a national standard that, but they refer to it as postal code medicine. That's got to end.

Barbara Pruitt

Wow. Yeah, it depends on where you lived as far as what kind of access you have.

Dale Paynter

What kind of access? And in it 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 just another thing that adds to our anxiety above our physical symptoms.

Barbara Pruitt

Right. And actually in Canada and the US. We're more fortunate than in some countries that they don't even have the treatments available in their country period. We have options, which is; which is wonderful. And 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 and in Canada would look at. But. Aside from that, I know you and I were both recently on a committee. with Dr. Donnie Arnold in at McMaster. And we were patient representatives on a committee that that developed the guidelines for the emergency treatment and care of patients with ITP. So how do you feel about participating with that Dale?

Dale Paynter

Hi. I think that was wonderful that we were invited to be part of that. barb and Researchers, I'm finding more and more researchers in the pharmaceutical companies take our contributions seriously. That's been a huge change for us that we that our voices are making a difference. We were able to help shape the kind of in that particular study which was for procedures or policies when you come to an emergency room. It was very important for them to, they felt it was very important. to hear what are we looking for when we come through the front door? And how do we, you know... 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.

And that. So, I think I think we sort of helped to... to shape the discussions or the 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.

Barbara Pruitt

Right. No, they're they listened to us. They really did. And actually, in our meetings, um you know, 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. 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. And there were like maybe four of us that were patient representatives, I think.

Dale Paynter

I think I think so, yes.

Barbara Pruitt

Yeah. Yeah. So, it was very, it was encouraging that they listen 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 and like you said, I'm so glad that that's part of the discussion now. it was Where's what's the patient's feeling and for pharmaceutical companies if they're trying to look for something to solve and, but our main concern is now, they're listening to us. So that's really good. It’s better for our community.

Dale Paynter

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? Would you like a pill? How often would you like to take it? Ha, it's... 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. 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. You know in terms of and a needle, but I can have a pill shipped out to you. Great. Let's do that.

Barbara Pruitt

Right. And a lot of that is you know 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. That's part of being an advocate for yourself. You have to. Make sure you're communicating.

Dale Paynter

And that's part of the... doing your own education. and being not only an advocate for others, but an advocate for yourself. I found so many times after coming home from a conference, learning new items I was almost afraid to talk to my hematologist because I just found out about this new and this and that. 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... go absolutely I was very lucky that she is an acquaintance and has worked with 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. We've seen so many heard so many stories, Barb 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; I'm going to use the word clientele of a hematologist. It's so difficult for your hematologist to keep up with everything. And so, you we do need to... without being pushy or being aggressive and say This is what information out other information is there. Is it possible that this could be an option? And more often than not, you though they will be receptive. But as I say, I've been lucky how involved and proactive my hematologist and their team have been. since day one. Here's the brochure. Simple.

Barbara Pruitt

That's wonderful. 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. that supportive.

Dale Paynter

We have enough We have enough roadblocks. We don't need more.

Barbara Pruitt

Right. Right. I know you're blessed with a hematologist who asks you about what did you learn? And my hematologist is the same when I come home from the conference. It's like, okay, so tell me what's the latest. What did you learn? What does so-and-so so-and-so say? 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, and which is terrific.

Dale Paynter

Absolutely.

Barbara Pruitt

You are considered a dedicated ITP awareness champion. And. I did see a picture of you on the PDSA Facebook page. You dyed your hair purple, Dale. What's going on here?

Dale Paynter

It's all about awareness. And getting the word out. Getting discussions started. It was an idea that grew out of... you our September awareness month. Okay, so what else what how else do we raise the bar? What else can we do to; I don't wanna say, you know get the word out, but get people talking so you know purple clothing is one thing but 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. 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.

Barbara Pruitt

That's how it that's how it came about?

Dale Paynter

And, and that. I work with engineers and technical people. and they made it very clear to me that this was going to happen. I threw out the challenge. It was accepted before I finished it. So, as you know their enthusiasm I knew I was committed; the response was terrific. You know, 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. ITP 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. I don't care. Let's do it. Get the word out.

Barbara Pruitt

Good. Good for you, Dale. Good for you. You need to see if other people will join in. and dye their hair purple, you know?

Dale Paynter

That's the next step, like I know we've seen yeah that this was just Not. This would be something that not many would have seen. I’m sixty somebody I'm a-year-old male doing this? What's up with that?

Barbara Pruitt

Well... Also with short hair, in a month's time, it probably grew out.

Dale Paynter

It was there for a bit, yeah.

Barbara Pruitt

Okay. Okay. 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. I never heard of anybody else with ITP. But once I went to my first, you know, PDSA conference and got hooked hooked in. I started. preaching about ITP and more people. Out of the woodwork you know I would hear from, you know, other people with ITP. And I was; people were calling me. And. you know it's amazing how when you talk about it. The word really does get out and like. Your coworkers probably know ITP. 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?

Dale Paynter

Well, I found the first couple years I would have co-workers come to me and say, my sister has that. or my neighbor or my cousin while she was expecting. 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. So that's... Getting the word out. But 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.

Barbara Pruitt

That's great. 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 would you say to somebody that's kind of sitting on the sidelines and thinking about. Well, first of all, mMaybe I want to go to a support group. Maybe I don't. How would you encourage them?

Dale Paynter

Start small. You don't have to be. A board member three years in. You don't have to organize a major event. You don't have to know everything about ITP. make it to make a difference. Start with what's manageable. Attend the support group meeting online or in person. There's two functions to them. Meeting people online, even last night in our in our meeting. There were two people in Vancouver that had never met. Another patient. Get together. Meet for coffee; do that. That's what you need we had another lady in our Ontario group that spoke two ladies in Manitoba. in win in the Winnipeg area. They got together and had made a wonderful friendship. Even to sit and talk with in In the Tim Hortons. Away we go. It's great you know, attend a meeting, volunteer at the at the events, join a walk. We need to have more of these across Canada. right in and we're spread out. I'm hearing so many more people that are; two or three in the community, let's get together. 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 or the work that's being done in Canada for this. And the McMaster team is a wonderful group of... and they're also approachable a bit you know. We do contribute to the work they do. And even the study that we did. that we helped them with the emergency management. PDSA contributes money to researchers to start these of these things. So, it's important to be able to do that. Or you just talk to a person and, and as you say, talking to a person on the street. Ironically, last week at that that at my 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. 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. so, I run like just talking about it in person or I wear it to a grocery store and people give me a thumbs up.

Barbara Pruitt

How about that?

Dale Paynter

It's just under the surface. Let's bring it up. Let's get that out.

Barbara Pruitt

Awareness is really a big part of it, but people can start small. They don't need to be; you know fully immersed, you know do what's comfortable for you.

Dale Paynter

No, they don't. It's what you want to do with it and what you want to make of it, Barb. 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 meeting Paul and now meeting policymakers that make a difference. 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.

Barbara Pruitt

That's great. And that's great. And you've used that voice, which is wonderful. i'm I'm proud of you, Dale. You've come so far, and you've done so much for the organization. and for the community.

Dale Paynter

It's all about helping others and helping our communities. We're all in this together. Let's make it as comfortable as we can for as many as we can.

Barbara Pruitt

Right. Well, I think we've covered an awful lot of ground here and I personally, I'm 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 and you don't know that you're born with this passion until you're faced with this. Right?

Dale Paynter

Absolutely. If you're put into the corner, you step up. And I thank all of the; 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 the people we work with and our staff are all here to contribute and make a difference. So, thank you for everything that you do, Barb.

Barbara Pruitt

Well, 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. Are you going to have purple hair this year?

Dale Paynter

We are still on the fence. The timing is, whether right whether I've debated whether I do it as... After everybody's contributed or do it at the beginning of September. 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.

Barbara Pruitt

And maybe you can expand it.

Dale Paynter

That sounds like a politician not saying yes or no, doesn't it?

Barbara Pruitt

I know. I know it kind of does. But maybe you could have more people join you, too. Who knows?

Dale Paynter

Well, that would be the next step for sure.

Barbara Pruitt

Wow. 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, just talk to you again. I haven't seen you in a couple of years and you look fabulous. Nice to talk to you.

Dale Paynter

Thank you so much. Yes, this has been wonderful.

Narrator

How do you live your life with a bleeding disorder like ITP? From working in the kitchen with knives, to navigating sharp corners in your house, going out to eat in a restaurant, traveling on a plane, attending a sporting event, even dancing at a wedding. ITP patient, Barbara Pruitt, shares her tips and tricks for moving through life with ITP for more than 60 years. Here's her lifestyle lesson for the day.

Barbara Pruitt

When you have ITP, you’ve searched 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. 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. 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. You might even want to include some examples. Also, include your current platelet count. Now why should you do this? well It will help you evaluate if your new treatment is helping you. Sometimes improvements can be very subtle. Sometimes treatments take time to work. At least you will have something to refer to. and compare your current status. This is important to do whether you are starting a new medication or even a supplement. like vitamin C, or papaya leaf extract. Whatever it is, 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. But you know what? My bruising. and petechiae. We're a lot less. Even though the medicine didn't raise my platelet count on paper. It was working for me. My insurance company. wanted to see my lab work. And because there was no change in my Playl account. They didn't want to pay for the medication. Well, my hematologist went to bat for me. He had a peer-to-peer conversation with the insurance company's doctor and told him. How it was working for me in ways that could not be measured. 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. 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. 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. Until then. Wishing you lots of happy healthy platelets.

Narrator

Thanks for listening to the PDSA podcast, Bruised but Not Broken, Living with ITP. Made possible by our presenting sponsors, Amgen and Sanofi. Special thanks to Gus Mayorga for composing our theme music. To see what's coming up, visit our website at pdsa.org and subscribe wherever you get your podcasts. Please share this podcast through social media with anyone who you think might benefit from the information and stories we share with the ITP and other platelet disorders community. As always, please speak with a healthcare care professional before making any treatment decisions, but know that pdsa.org is a wealth of information and resources to help you navigate life with ITP and other platelet disorders. Remember, you are not alone.