ITP 101: Understanding Immune Thrombocytopenia

TRANSCRIPT

 

Jody Shy

Parents tell me all the time, “I just want my child to be normal.” And I tell them, but this is their normal. And they're meeting somebody else who is that same normal. And it's really important for kids to have that and to have that connection with somebody else just like them.

 

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

Hi, good afternoon, good morning, good evening, and thanks for joining Bruised but Not Broken. I am Barbara Pruitt, your host. Today we're going to talk to Jody Shy, who is the Director of Programs and Events for the Platelet Disorder Support Association. Jody is the person that wears many, many hats and in so many ways. But today, I'm going to follow up on a previous podcast we had about the PDSA, and how many ways they can help the children that are diagnosed with ITP. So, Jody, welcome and thank you, thank you for joining us today.

 

Jody

Well, thank you for having me.

 

Barbara

I know that when a parent calls the PDSA office, they're usually very early in their child's diagnosis and it's very anxiety producing for them. I know I have talked to many parents over the years that are going through this newly diagnosed stage, and as hard as it is for their child, it's always harder for the parents because parents live today and in the future, and a child lives for today. Parents are worried about the what ifs, and, you know, how to handle tomorrow and next week and next year and the questions go on and on. And one of the things that I always tell anybody that I talk to, “Do you know about the annual conference, the PDSA conference?” It is the most valuable thing I think that the PDSA has to offer. Parents, children, adults, whoever, whatever your relationship is with ITP, if you go to one of the conferences, you are going to feel so empowered and so much more knowledgeable about the disease, and you will walk away feeling like you're not alone in this world. That not only goes for the parents and the adults that have ITP, but it goes for the children. So, Jody, tell us what happens with the children with ITP during our conference.

 

Jody

Our conference is three days, and it's heavy scientific sessions about treatments, and about research, things on the horizon, clinical trials. Children probably don't want to participate in those. So, I believe it was 2013, we created “Kids Kamp.” And Kids Kamp happens during all sessions of the conference. And it's for children who are ages 5 to 12. It is structured playtime. The kids are doing crafts. They're doing scavenger hunts. They are watching movies. But the most important part of Kids Kamp is they are meeting other kids who have ITP. And for some of them, they have never met another child like them. So, they're finding their community. They're finding those people who understand what it is that they're going through. And those bonds are amazing to finally see someone else who understands what it is that you're going through. I know for adults it's life-changing, and I know for the kids it's life-changing. This program is near and dear to my heart as well, so I love talking about it.

 

Barbara

I know, as I was diagnosed at the age of four, and I lived in a small town. I never met anyone else with ITP. First of all, nobody knew what ITP was, but I didn't meet anyone with ITP until I went to my first PDSA conference and I was like 45 years old. So, from the age of four to 45, I was this weirdo, you know, this weird blood disease that I was always explaining, you know, because I'd have bruises, and I never was able to meet anybody else with it. And I can't help but think how valuable that would have been to at least have had a friend, whether they were far or near, but another child that had walked in my shoes that knew what I had been going through as a child. I mean, as an adult, we make excuses, and we figure we're strong enough to handle it ourselves.

 

Jody

Exactly.

 

Barbara

For a child, all they want to do is be a child and they want to be normal.

 

Jody

Right.

 

Barbara

So, you put these kids together, and for that weekend, they're all normal.

 

Jody

They're all normal for them. That is normal, to meet others who are just like you. You know, it goes beyond the kids knowing each other and talking with each other, but then their parents start talking to each other and they find that commonality. I know last year was probably one of our biggest Kids Kamp. We had 14 children in Kids Kamp and it was amazing and they ran the age range from 5 all the way up to 12. But I reached out to one of those parents recently and she told me that they have a chat group amongst the children so that they can all still continue to talk to each other, so that they can stay connected with each other, that they talk to each other each week and just share what's going on in their lives. So, those are the friends that make their life normal. That's the normalcy for them. It's really important because I know parents tell me that all the time, “I just want my child to be normal,” and I tell them, “But this is their normal, and they're meeting somebody else who is that same normal.” And it's really important for kids to have that and to have that connection with somebody else just like them.

 

Barbara

And to know that they're not alone in this.

 

Jody

Absolutely.

 

Barbara

Because in their own community, in their own environment, there may not be another child that has ITP that they can meet. And this gives them the opportunity to be with other kids and participate and be normal. Now, what about their siblings? Are they able to go to the Kamp?

 

Jody

Yes. So, we do have a lot of siblings who come into Kamp as well. And the thing is, siblings understand. They've been there. They've been through this with their siblings. So, they understand. And so, they're getting a chance to meet other siblings who are in the same boat as them. It's hard on the whole family sometimes. And so having siblings who get to meet somebody else who understand that sibling role. A lot of times these children are kind of the focus. The parents are focused on what's going on with them. And so, this is a way for everybody, it's just a level playing field. Everybody is the same in Kids Kamp. It's not because you have ITP or you don't have ITP. It's just you're meeting all of these people who understand the ITP journey. It's really powerful.

 

Barbara

And who is it that runs the camp? I mean, do they talk about ITP with the kids? I know they have special projects sometimes that they do.

 

Jody

It depends. We've had two young ladies who actually started Kids Kamp, Melissa Hilsabeck and Kristin Hunt. And then there have been staff people who have been in there. There have been volunteers. My children have volunteered in Kids Kamp. This year, we will have a staff person in there as well as volunteers. And so, they do answer those questions. They do answer questions that the kids might have. Each child gets a backpack and in it we have an awareness band and a stress ball, but we also put that Understanding ITP booklet in there too. Just as a way to, if there's questions that they can ask those questions in there, we, like I said, we do have a staff person in there who's knowledgeable, and if they don't have the answer, they'll come and find me, and I will find someone who can get that answer for them. But it's a way for parents not to have to worry, “Is my child bored while sitting in the session?” They're taken care of. They have so many activities that a lot of times the parents will come to get them. They're like, “No, no, I don't want to leave yet!” Because they are having so much fun in there, and that's what this whole program is all about, is just allowing them to be themselves and have fun.

 

Barbara

They make friends, which is wonderful. And I'm sure that the siblings that attend with their brother or sister, they must feel really good, because they're learning more about ITP and they're probably seeing how they can be friends and supportive with their brother or sister and being kind of a watchful eye. Which ends up being, you know, some people can think it's a burden on a sibling, but when you're family and you love your brother or sister and you don't want to see them hurt, you know, sometimes there is a little bit of pressure on the sibling to keep an eye on so-and-so. I don't want them to fall or trip or, you know, we got to be careful. I think this Kids Kamp is absolutely fabulous. I wish that had been around for years, but I tell you, I've seen the kids in the Kids Kamp, they go around like a little group, you know, they just want to spend that whole weekend, they want to spend it together, which is terrific. As these kids in the Kids Kamp get older, I know there's another area for them to go. So, what all is that about, Jody?

 

Jody

There is. So, once kids age out of Kids Kamp, it's hard. Once you're 13 years old, you really don't want to hang out with kids that are younger. We have a teen and young adult track at the conference that is facilitated by Dr. Michael Tarantino and his staff. And they either do an activity, one year they created a board game that look like a monopoly game but it was about ITP, they've created t-shirts and backpacks, but it is a space for these kids can understand, now as they're becoming teenagers how things change. Different things that they have to watch out for, transitioning to an adult hematologist versus a pediatric hematologist, talking about that transition to college. So, it's a space for all of those things, and again, it's a way for them to connect with each other. And our kids who age out of the Kids Kamp, they naturally flow into the teen and young adult program, because they have been together, and so it naturally flows into this next phase of their life. And it's wonderful that we have this available for them, and it's a program that we are going to be expanding out into a yearlong program so not only will it be just at the conference, but there will be virtual get-togethers, you can hang out on Zoom. There's going to be different opportunities for that group, especially as they start getting older and want to advocate more for their own health and for their own futures and what that looks like for them.

 

Barbara

Well, what's really nice about it is, as the child is going into adolescence, there's a lot of things that they don't necessarily want to talk to mom or dad about. And this is a safe space for them, because when they're in this teen program, Dr. Tarantino, who is a fabulous hematology pediatrician, and he deals with children all the time, it's a safe space for these kids because no parents are allowed. This is for the teenagers and young adults and his staff, nurse practitioners, and will come to the conference also. And so, they are used to having teenagers and young adults asking questions and stuff. So, they know what they're dealing with and they have the answers for them. And it just also forms a bond between these young adults, these kids, or these children that have become young adults. They really formed some great bonds. So that's a wonderful.

 

Jody

It's fun to watch them. It's fun to watch the progression of these children. There's a young man who went through our Kids Kamp and was part of the Poke-R Club, who is now part of the teen program, who leaves for college in the fall. And he's going to be a nurse and go into public health. Like, that to me, is about empowerment. He has felt empowered through all of these programs to really advocate for himself and now to move forward and advocate for others. It's a phenomenal progression to watch, that these children feel comfortable enough to start advocating for themselves.

 

Barbara

Well, I think about Kristen, who is, and now she's a doctor specializing in pediatric immunology.

 

Jody

Exactly.

 

Barbara

And she’s one of the two people that started the Kids Kamp 10+ years ago, and now fast forward and she's an actual doctor helping children.

 

Jody

We hear it often, we had a young lady who was a teenager, came to the conference, got involved with the teen program, her mom told me at the end of the conference, and this was several years ago that she felt empowered. She found her voice and she went to school to become a nurse because of everything that she had been through. And now she's a nurse, and she's a young woman and she comes to the conference with her mom, and she has felt empowered. She's now a Conference Ambassador, where she's showing others what it's like to come to our conference and just answers questions. It's really amazing to watch the progression from teenagers to young adults and just how empowered they feel.

 

Barbara

I'm sure that's a big reason why I went into nursing with all of the medical experience that I had as a child, you know, with ITP.

 

Jody

Absolutely. It makes a difference. When you're around that, as much as patients are, sometimes a natural progression.

 

Barbara

Yeah. And there is another thing that I think is phenomenal when it comes to parents and kids with ITP. There is a video conference that's available. So, Jody, tell us all about this. I just love this idea because we're not all located in the same space, you know, the same place. So, this is an opportunity for parents all over the US. Does it reach any further than that?

 

Jody

It has a global reach. We actually have a mom and her daughter who joined from New Zealand.

 

Barbara

Terrific.

 

Jody

It does have a huge reach. This teleconference actually was pre-COVID. This was, the children met on the phone. It was through a phone call. The whole premise of the Parents and Kids with ITP Teleconference is for children to have a chance to talk with each other, and then also for parents to be on that call, and to be able to get questions answered. So, the first 30 minutes of those calls are children talking with each other, and now we have the capability of doing that through Zoom, so they can see these other children. They can communicate with them. They can, a lot of times, this is the first time they've ever seen someone else with ITP. And 30 minutes of that call is facilitated by PDSA, but there's also a young woman who's on there and she's helping facilitate that. She is doing it peer-to-peer. She just engages them in conversation, asks questions. It's really been amazing to watch the kids really open up when they see someone who is at their own level, rather than it being Jody Shy asking them questions, it's a peer asking them questions. And after that 30 minutes, then the parents are on the call, and there is a pediatric hematologist and ITP expert who's on the call. We work with the Pediatric ITP Consortium of North America or ICON. A doctor from there will be on the call and they'll answer parent questions about their child's own ITP journey. The ICON doctors always fight over who's going to get be on that call because they love the interaction. A lot of times they'll join 30 minutes before and just see the interaction of the children. But it's really nice for parents to have a way to ask those questions that they might not get to ask during a lab or during a visit in the office. And it's nice to have somebody who's an expert who can answer those questions for them.

 

Barbara

That's a phenomenal opportunity for parents. It really is, because these are people that are experts in blood diseases and ITP and it could very well but be that you, where you live, maybe you don't have a hematologist, you might be followed by an internist, or your child followed by a pediatrician, and you've got questions as far as your child's diagnosis and symptoms and treatments. And this gives you the opportunity to speak to an authority, an expert on ITP. So, how does a parent and their child get hooked up with this video conference?

 

Jody

We list all of the meetings on the PDSA website under our support group listings, and then we also send out an email blast to all of the parents of children in our database. So, they will get an email letting them know about these calls. They happen quarterly and a lot of times we're working at the mercy of the doctor's schedules as well. But we want to make sure that we have that opportunity for the parents, that there is someone on those calls. But all they have to do is register for the call. They're free to participate. And, again, they'll be sent a link through Zoom. They can join the call that way. And, like I said, the first 30 minutes are their child on the call. And then the remainder of the call is the parents with the doctor.

 

Barbara

And I'm sure that the children look forward to this opportunity to see their friends, if they've met them before at the conference, and the parents too.

 

Jody

Absolutely. It's just another way for them to connect with each other.

 

Barbara

Right. Which is wonderful. Well, I have to tell you we might be ITP warriors, but Jody, you’re our ITP hero today and we appreciate all that you are doing for the ITP community and talking to you about all the support that you all give for children and their family is just phenomenal. We thank you, thank you, thank you for being with us today.

 

Jody

It is my pleasure.

 

Barbara

And as far as our listening audience, reach out to the PDSA if you have questions. Jody has tons of answers for you, as well as the other staff members, whoever answers the phone, take it from me. They know what they're talking about. Reach out to them. And of course, go to the website, pdsa.org. There is hundreds of pages of information there. There's treatments, research, patient stories, support group information, conference information, oh, a plethora of stuff, more than you can read in one evening.

 

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

Just a tip. Around the house, we usually, if you look, you'll find some sharp corners, whether it's on furniture, or cabinetry, or doors, there's going to be sharp corners around. So, in the future, when it comes to buying furniture or remodeling a kitchen or bathroom or something, think about the sharp corners and make them rounded. You don't want to buy a bed that has sharp footboard corners on it because inevitably you're going to be walking into your bedroom, and at some point, you're going to hit that corner with your shin, and it'll leave a big bruise, and which is something of course you don't want. So, in the future, look for more rounded corners. Another way that you can assist in the round and the sharp corners that you have, you can buy these foam type things with sticky stuff on the back that will adhere to some sharp corners, if you find that you're always hitting the same one. I know my daughter was concerned that I have a round marble coffee table, and with her toddler, she was worried that he was going to fall on it, hit it, whatever. And this is for a little boy that does not have ITP. So, I went to the Dollar Tree and bought some pool noodles, cut them up lengthwise down the center and wrapped this coffee table of mine with some duct tape and pool noodles. It did the same thing. I mean, it's protected him from bumping into it, but it's something that would be easy enough to do in your home to protect you from any sharp corners. So, that's my lifestyle lesson for the day. And stay tuned for our upcoming podcast. We hope we can answer some of your questions and guide you in a safe direction, and between now and then, gentle hugs, which I love to give out because if I give out a hard hug, I might get bruised. So, thanks for joining us today and hope to hear from you in the future. Bye.

 

Narrator

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