Melissa Hilsabeck

ITP Awareness Month is a chance to shine a light on a condition that's often misunderstood or overlooked. It's about giving ITP a name, a face and a story for all of our patients.

Caroline Kruse

And it also is an opportunity, I think, to empower patients with ITP, to empower them to go out to their places of work, to their schools, to participate in PDSA's national ITP walk, run, to raise awareness and to celebrate.

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.

Barbara Pruitt

Greetings and welcome to another podcast of Bruised but Not Broken: Living with ITP. I've got Peter, my husband, here with me today. And guess what? It's already September. Do you know what September means?

Peter Pruitt

What does September mean? Wow, lots things. Summer's over, school starts. I'm sure that's not why you're asking me that.

Barbara

No, not really.

Peter

But I know what September is.

Barbara

What?

Peter

Okay. September is the one-year anniversary of your podcast.

Barbara

Oh, yeah, you're right. I hadn't thought about that. But you're right. It's been a year. I started last September. And actually, the reason that we launched in September is because September is what? September is special with the PDSA.

Peter

September. Oh, September is ITP Awareness Month.

Barbara

There you go. And there's lots going on in September with the PDSA and with the ITP community. That's right.

Peter

Buildings get lighted. I get to wear all my purple stuff.

Peter

You get to wear everything purple. have so much purple stuff. I get; finally get to wear it.

Barbara

In your wardrobe. That's right. Every day you'll get to wear something purple. I get to too. I get to wear purple also.

Peter

So, who are the guests for this episode?

Barbara

Well, I have Caroline Kruse and Melissa Hilsabeck because they know all about it.

Peter

So, you're talking about ITP Awareness Month?

Barbara

Yeah. Oh, that's what we're doing.

Peter

Great idea.

Barbara

I think so too. So anyways, that's what our podcast will be about today.

Peter

Let's get to it. All right.

Barbara Pruitt

So, who better to talk about ITP Awareness Month than Caroline Kruse, who is the PDSA president and CEO, and Melissa Hilsabeck, who is the Director of Outreach and Community Engagement for the PDSA. So welcome to both of you.

Caroline Kruse

Thanks, Barb. So nice to join you.

Barbara

It's great to have you here. I know that the ITP Awareness Month is September, and that's something that maybe our listeners aren't aware of. And I think it's something that's really so important for the organization. So, let's talk about it. Let's discuss it. What does ITP Awareness Month mean to our organization? And why is it so important to ITP?

Caroline Kruse

Well, ITP, as you know, Barb, immune thrombocytopenia is a rare disease. And so quite often patients never get the opportunity to meet other patients with ITP. And the other issue is there's not a lot of public awareness of ITP. And even though I say it's a rare disease, it impacts around 60 to 80,000 people in the United States We think those numbers are much higher. It's probably around 100,000, maybe even more.

The reason we don't really have a good handle on how many patients are affected by ITP is because there's not a surveillance program, a federally funded program through the CDC, the Centers for Disease Control um and Prevention. And if there was, we would truly have a handle on how many ITP patients are affected. And so, because it's a rare disease and people don't often get to meet another person with ITP, this is a way to spread awareness, not only in the U.S., but of course around the globe of what ITP is.

Barbara

Thank you.

Caroline Kruse

And it also is an opportunity, I think, to empower patients with ITP to empower them to go out ah to their places of work, to their schools, to participate in PDSA's national ITP walk, run, to raise awareness and to celebrate. I know that's a word you think you know we wouldn't use right with having a rare disease, but to celebrate the fact that you know we're affected by this disease, and we're empowered to share that with others. And Melissa, of course, organizes and one of the most successful PDSA Pump It Up for Platelets Walk runs in Southern California. So, I'm sure she can talk about what ITP means to her and to her family and friends out there in California.

Barbara

Yeah, fill us in, Melissa.

Melissa Hilsabeck

Yeah, it has been a long journey and every year so different, but it brings new faces, new families, especially new patients and their families, anywhere from San Diego all the way up to Ventura. Sometimes we get folks from Sacramento that come to our walk and we've kind of had walks in September, we've had them in October, November. So, our date kind of shifts around, but we really kick off ITP Awareness Month in September to let people know that we have our event coming up. And to me, ITP Awareness Month is a chance to shine a light on a condition that's often misunderstood or overlooked. It's about giving ITP a name, ah face and a story for all of our patients and folks that maybe don't have ITP, they can be a part of our conversation just to learn and they can ask, what can I do to help? And it's really great to see people engage online. Oh, I never knew about this. Or it sparks a conversation. Oh, my friend's cousin has this condition. I'm so excited to tell them all about the PDSA and share what I've learned with them.

Barbara

You have a walk run. What are some other things that people can do to raise awareness?

Melissa

People can use PDSA's social media toolkit. um One of the biggest things that we see is for folks to wear purple all throughout September, um whether that's they get their coworkers or a group of friends together and take a group photo and then share that online or share that with PDSA so we can show all the different groups that are getting together. You can even do something as simple as pick up the phone or tell a stranger about ITP, tell a new friend or a colleague, and just telling one more person really does make an impact in getting ITP more well-known.

Barbara

Well, I think that the idea of sport purple for platelet day is really clever. And I know that on our website, you've posted pictures of people who have enlightened their workplace and everyone on a certain day wore purple and they take a picture. I think it's just terrific to see. And then classrooms of kids that may, a child might have ITP and the whole classroom wears purple on a special day. I think that's wonderful in such a simple way to get involved and spread awareness

Caroline

And PDSA has a multitude of purple t-shirts in the office. And Barb, I remember during COVID, my husband Ken and I visited you and Peter in North Carolina. And we went for a hike in the mountains and we had our masks on and our purple t-shirts. And I remember my t-shirt said, ask me about ITP. And we walked by a group of guys and the one guy looked at me and said, tell me about ITP. And I looked at him and I was shocked. And I said, what, how do you know about ITP? And he goes, it's on your t-shirt.

Barbara

Oh, you see, and that was so simple. And that that does spread the word, right?

Caroline

Yeah, absolutely.

Barbara

Great. Now, how does this, all of this affect the mission? You know, the mission of the PDSA is so important. And how do you feel that it's really enhancing the mission?

Caroline

Well, our mission statement, the Platelet Disorder Support Association, is dedicated to enhancing the lives of patients with immune thrombocytopenia, ITP, and other platelet disorders through education, awareness, research, and support. So, we are fulfilling our mission by raising awareness about the disease. And um PDSA established ITP Awareness Month ah for the month of September back in 2010. And it was actually a year-long campaign to be able to get on the National Health Observance Calendar. And there was like a whole series or a whole set of criteria that we had to meet to be able to get on that health observance calendar.

And one of the interesting things is I remember we had to be very creative about this is because you had to have information on your website on how to prevent the disease. Well, how do you prevent ITP, right? It's an autoimmune bleeding disorder. You know, there's nothing you can really do to prevent you know, and most people, of course, don't know they have it until they're diagnosed with it. Or maybe they go in to have a physical and they have, you know, a CBC, a complete blood count. And then are told that they have a low platelet count. um So, you know, we just had to talk about, um ah you know, education, awareness, just living a healthy lifestyle, which we all know is so very important to be able to meet that criteria and to get on the health observance calendar. So, once we established September as ITP Awareness Month, um we created this section on the PDSA website and created a toolkit and put our campaign together. The campaign changes ah slightly every year. And so, Melissa can talk a little bit um more about this year's campaign.

Barbara

Yeah. Melissa, tell us about this year's campaign. What's different about it?

Melissa

So, this year, our campaign for ITP Awareness Month is shining a light on ITP or lighting up for ITP. And we've started to ask for help from all of our patients and caregivers and our awareness community to find monuments in their local communities and ask them if they can turn purple for either the entire month of September, the entire last week, or the most important day is the last Friday in September, which we'll get to talking to you about in a minute. And so, lighting up all of these buildings signifies the strength that our community has and brings those folks together. Some of the monuments will share on their social media accounts or their website what it means for their building to turn purple. So usually we'll provide them with a little paragraph talking about what ITP is and why it's the color purple. And most of the folks know that purple for ITP signifies the mysterious bruise. And so it really is a way for us to bring our community together. And in addition, there's a couple monuments in Canada that that are going to get lit up. um And this ties into global campaign that we'll also get to talk about in a little bit.

Barbara

Melissa, let me ask you, how difficult is it for someone to go to someplace in their community and ask them to light up their buildings or whatever? Is this a hard thing to do? Can a regular person do it or does it need to come from the organization?

Melissa

Absolutely. This is a great question. So PDSA will help support that effort um in providing maybe some of the language that's used, or they might ask for some specific contact information about your organization, which we can help provide. But other than that, we really encourage patients to find a local monument. Typically, they'll have something on their website that says you can submit an application or email a specific person. And then it'll take a couple weeks usually to hear a response and there'll be some follow-up questions. Depending on what the monument is, it might be a little bit more difficult um if it's a prestigious building or a building that frequently changes colors for different awareness campaigns, they might have a lot of requests. So, we don't know if you don't ask. And here we're asking for everyone to get involved and participate. And if you have any bumps in the road along the way, PDSA is here to help.

Barbara

Which is great. You guys are so terrific with supporting people and their movement forward for awareness. So, Caroline?

Caroline

I was gonna say, Barbara, as you know, PDSA has a very wide global reach. However, we have a very very small staff. So, we do rely on our volunteers and our members to help us spread awareness. So, we greatly appreciate anything ah folks in the community can do to support those efforts.

Barbara

And how does the global awareness campaign work globally? I mean, what are the things that are happening around the world?

Caroline

Well, in 2016, I co-founded the International ITP Alliance because there was a need for education, awareness, connection, and really a shared understanding on a global level. And while there were several ITP patient advocacy groups around the world at that time, most lacked funding and essential resources. So, PDSA created the website globalitp.org and we began to mentor and provide translated materials to other patient organizations. We provided mentorship, we inspired them with the work that we were doing to advocate for better treatments and access to those therapies and because of that, we've now expanded the International ITP Alliance to 34 patient organizations from 30 countries. And we connect them to other patients, to clinicians, to caregivers, ah to clinical trials, and through resource sharing and collaboration, we've really helped to drive meaningful change

Barbara

Thank you.

Caroline

In more than 30 countries worldwide. And so, after PDSA had established September's ITP Awareness Month, a few years later, ah PDSA had a relationship with the ITP Support Association in the UK. And that was the organization where we partnered together to establish and the to establish the International ITP Alliance. And the woman that was the founder of that organization contacted me and said, you know, could we join PDSA in ITP Awareness Month? And so, they joined us the first couple of years. But then as we started to grow the International ITP Alliance, we felt there was a need for Global ITP Awareness Week specifically. Because again, not all of these groups, some of some of the international alliance groups are just volunteers. They don't have the resources that PDSA has. They don't have a staff. And so, I think Awareness Week is um you know is a great amount of time for them to raise awareness around ITP in their country. And it's really amazing to see some of the work that these folks have been doing but it's not just the patients. We see many of our industry partners, um hematologists, the physicians, the clinicians. They also, are I mean, around the world, they also participate in Awareness Week.

Barbara

Thank you.

Caroline

I remember a couple of years ago, there were a group of hematologists from Egypt, and they all had on PDSA purple T-shirts, and they were rowing down the river and took a photo of themselves and sent it in to PDSA. And, um you know, Melissa can talk about a little bit more about the, you know, the global week, but we take all of those photos, and then we'll put them up on social media, we'll put them up on our website. And then we'll run like a two-page spread in the fall issue of our newsletter, The Platelet News.

Melissa

So, one of the great things about the International ITP Alliance is that they meet twice a year to talk about the different activities and conferences that they're going to be attending. And it gives us an opportunity to really be a global united front across the world. And part of these meetings, we have talked about what ITP Awareness Week will mean coming up for this calendar year. And it gives us an opportunity to hear everyone's ideas and take them into consideration and then come up with these graphics and a slogan and a theme. And that way, each country that's a part of the alliance is represented and heard on behalf of their patients. So, this year for the social media toolkit, you'll notice it's a little bit different because we've collaborated with the International ITP Alliance. And so now, besides the US and Canada, we're trying to represent countries across the world. So, you'll see more incorporation of all of the different countries in our graphics, talking about Global ITP Awareness Week, where are you representing? So, we have a PDF that you can print out and you can write your city, your state, your country that you're from. We're asking folks to take a photo with it. And that way, when we post it on social media, you'll use the hashtag Global for ITP. And that can be the F-O-R or the number four. And that way, folks that are using that hashtag around the world can also see that you are participating wherever you are from.

Barbara

That's great. It's wonderful to see the outreach that has occurred with your global alliance and your international ITP alliance. I think it's terrific. Are there any special stories that stand out in your mind? I think the Egyptian group on in the rowboat sounds fabulous. Is there anything else that comes to mind that was celebrating this ITP Awareness Month?

Caroline

Well, I remember we were in Orlando at the ITP conference, and we like to have, oftentimes over the years, before the conference starts Friday morning, we would have our own little walk run with attendees at the conference. And so, we all had our purple t-shirts on and we had a little walk around the hotel. It was beautiful lake, beautiful area. And there was a young woman who was on her honeymoon. She was with her husband and she saw us all standing there in our purple t-shirts and she saw the letters ITP. And she came over to us and said, I have had ITP since I was a child and I have never met anyone with ITP. And she started to cry and she said, what is this about? Tell me more. And a small group of patients kind of, they made a circle around her. I mean, it was like so touching to see something like that. And she was so moved by that experience. And we've heard stories like that at our different events, our different walk runs, where just coincidentally, someone is walking by and they say ITP. And again, for a rare disease to hear someone say, so I have ITP or I know someone with ITP. So again, it's not as rare as we think it is. And to be able to have these events to raise awareness and spread the word about the disease or let folks know about PDSA and all of the programs and resources that we have to offer is just really important. And again, just very empowering for patients who live day in and day out with this disease.

I remember a couple of years ago; we received a photo from some healthcare professionals in India. They worked in the lab. It was a group of men and women who wanted to spread awareness about ITP. So, they dressed up in traditional Indian garb. The women wore the saris and the men had these costumes on, but they were, oh, they were just so beautiful and they were all purple. And then they took a photo and sent it in to us and said, we wanted to show you that we are celebrating ITP Awareness Month in India.

Barbara

That's very heartwarming, isn't it? That's on the other side of the world. And that's what they were sharing with you. That's wonderful. um Melissa, let me ask you, is there something simple that let's say, um if my niece or nephew had ITP, and I wanted to do something to support the awareness, is there something simple that I could do that wouldn't take a lot of effort that really can make a mark?

Melissa

Absolutely. So, there are quite a few options depending on what you're comfortable with. um If you feel comfortable and you're on social media and you wanted to share a photo of you with your niece or nephew and just talk about what ITP is or maybe their experience and what they're going through, you can always link back to the PDSA website so folks could learn more. You could use our PDSA social media toolkit for ITP Awareness Month and share one of our graphics and then your narrative talk about your niece and nephew. If that's not something that you're interested in, PDSA can help you set up maybe a fundraising site so we can put the registration link together and you can share a story about your niece and nephew or the patient that you're trying to raise awareness for. And you can ask folks to donate to PDSA and that money goes directly to all the programs and research um for ITP and the patients that we support here through our organization.

In addition to that, you could do something completely on your own and talk, like I mentioned before, talking to your coworkers. You can host the ITP awareness party or just a barbecue and have it purple themed. So, you can talk about ITP and why is everything purple. So, the sky is the limit. Anything that you're interested in doing. We actually had a patient come to us saying that they wanted to put on a car show. So, this past August. They got together and invited different members of their community to bring out their classic cars. And some of the registration funds went towards PDSA as a fundraiser. And that was a very unique way to bring folks together that we haven't seen before. But really, the sky's the limit. Anything that you can think of, we are very open and encouraging folks to come up with something that's unique and meaningful to them.

Barbara

I remember one story was somebody held like a bowl-a-thon you know, which is in any kind of sport you can think of any interest that you have, you could actually turn it into a fundraiser of some sort, or just an opportunity to raise awareness. So, I think all of those lead to the benefit of the PDSA and of course the ITP community. So, this has been terrific. I think we all should be really excited every September. We should have a purple wardrobe and like Caroline, you said earlier, actually celebrate. and I know that's a hard thing to consider when you're dealing with something like ITP, but actually, from my perspective, celebrate all the stuff that you all are doing because hey, it turns out it's very important to me as a patient and the other patients. And hopefully our listeners on the podcast will think of a good way to spread the word. And I know that they can turn to the PDSA office at any time and the website for help. So, thank you.

Melissa

So, just a reminder, some important dates. Starting September 1st is ITP Awareness Month here in the US and Canada. In the last week of September, we consider Global ITP Awareness Week. So that's when we'll start to see a lot of the monuments turning purple all across the globe. And the last Friday in September, which is September 26th, is Sport Purple for Platelets Day. And that's when we really see all the photos, the folks in purple coming about. And then we try to gather all those photos and put them on our website to share. So, all month long, there's going to be some great content. But those are some of the most important dates to keep in mind.

In addition, if you weren't able to attend our ITP annual conference this year, starting September 1st, all PDSA members will be able to access the recorded sessions on the ITP conference virtual platform on the PDSA website, which is a tremendous benefit to our members. Each session is presented by one of PDSA's medical advisors or a prominent physician within the ITP community, whether they're treating patients or they're doing research. And there's just so much phenomenal content that we talked about this year. So, if you're not a PDSA member or you need to renew your membership, you can do that before the end of September.

Barbara

That's great. Thanks for laying that out for us. That's terrific. Caroline?

Caroline

Yeah, I just wanted to mention on September 16th, I was invited to the floor of the New York Stock Exchange in New York City for an ITP event. And I will be there with a few of the PDSA staff members along with some members of our New York local ITP PDSA support group. And I will be ringing the closing bell in honor of ITP Awareness Month. So that's really exciting for us.

Barbara

Wow, that sounds really cool. That is; hopefully, I know you, you will have some of it on the website, I'm sure. That'll be terrific. How cool is that? How many people get to ring the bell, the closing bell at the stock exchange? That's really cool. Great. Well, thank you, both of you.

Caroline

Yeah, I will be wearing my purple.

Barbara

Of course, of course. I wouldn't think of anything else. If I saw you in another color, I would be amazed.

Caroline

Thank you for the opportunity and Happy ITP Awareness Month.

Barbara

Thank you. Happy ITP Awareness Month for all of you and all of our listeners. Thanks so much for joining us today.

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 or 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

Well, this is a first. I've got my husband here for my lifestyle tip. You've never been on one with me before, have you?

Peter Pruitt

No, never been on one of your lifestyle tips. So why am I here?

Barbara

I guess just to verify what my very important tip is today.

Peter

Okay. What is that tip?

Barbara

Well, if you've got ITP, I certainly hope you are thinking about your own personal safety Because not having enough platelets and your safety go hand in hand. You need to have something on you that tells people that you have ITP, that you have a lack of platelets. So that is, without a doubt, extremely important for anyone that has ITP. And so, you know what I do, right?

Peter

Yeah, you have a bracelet you wear.

Barbara

No, I have a necklace that have.

Peter

You're right. You have a bracelet too.

Barbara

I do you're right. You're absolutely right. You're right.

Peter

You never leave the house without that necklace.

Barbara

Right. And I have a bracelet for backup for whatever reason. If I don't want to wear a necklace, I can always put my bracelet on. But that's something I wear all the time. I mean, if you're going to run into me, you're going to see it around my neck. I know people are vain. They don't want it to be shown and stuff, but you've got to do something that in case of an emergency that alerts whoever's responding that you do have a platelet deficiency and you need to be cared for in a certain manner. It sends out some red flags, which I think is really important. And actually, I know that I even wear a bracelet, an ITP awareness bracelet on my wrist, which

Peter

You mean this ah awareness band like I have?

Barbara

Yeah, that's right. You wear one.

Peter

I do wear one. I think I've had one on continuously for a long time. Since they came out This is my second one.

Barbara

Yeah. I remember your first one. It wore so thin it broke. Right. This one's looking pretty thin as I look at it right now.

Peter

I know, but it's a little bit of a superstitious thing with me.

Barbara

What? You don't want to take it off?

Peter

No, don't want to take it off.

Barbara

I know. And you don't take it off.

Peter

It's maybe I'm superstitious, but it's good luck.

Barbara

Okay. Okay.

Peter

So far, so far, so far for you, it's been good luck. You've been relatively stable for many years. And that's having a very low platelet count. Well, when this one wears out, I'll get another one.

Barbara

Okay. That doesn't mean my luck will run out.

Peter

No, no, no. I'll replace it. it

Barbara

Okay. Well, that'll be good. Well, I think if, you're out there and you've got ITP, I think certainly you need to be wearing something that signifies that you've got ITP. And actually, this is a good month to think about it because it's ITP Awareness Month. And at the Platelet Store, they have 20% off of all the merchandise. And it would be a great time for you to go ahead and get your medical alert necklace from them because they've got those at the Platelet Store.

Peter

They have the lucky awareness bands.

Barbara

Very good.

Peter

What's that thing you have on your seatbelt? Does that come from the platelet store?

Barbara

Yeah, it does. They have this, this wrap that you put on your seatbelt, the one that goes across your shoulder that says Platelet Disorder Support Association, ITP. So that's just another thing that you could have in your car that kind of alerts, you know, somebody that, oh, wait, what is this all about?

They also have jewelry. I mean, really pretty jewelry. And actually, and there's a ah woman that makes this jewelry for the Platelet Store and she has ITP and all of her proceeds go to the PDSA and all of the proceeds from the platelet store go to the PDSA to support all of their work that they do so you know

Peter

There's lots of stuff; I mean they really do have lots and lots of stuff it's probably good time to get something.

Barbara

But 20% off yeah.

Peter

Back to your lifestyle tip. They've got some great things you can wear to identify you as having ITP and a good time to save 20%.

Barbara

That's right. And I've got some stickers that I have on the back of my car. They've got car magnets. They've got a lot of t-shirts, purple t-shirts and lots of, lots of different things. So anyways, if you're in the mood to shop and also if you do not have a medical ID necklace or bracelet, please look at the Platelet Store. And take advantage of their sale. And just to be safe, you really need to be wearing a medical alert necklace or bracelet. So that's it for today.

Peter

Happy ITP Awareness Month.

Barbara

Right. Happy ITP Awareness Month,

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 Majorga 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.