Bulwark Takes - The Miraculous Life of Shane DiGiovanna

Episode Date: March 8, 2025

The 26-year-old Ohioan has not let his rare genetic condition prevent him from having a rich life. But Trump’s second administration is creating new risks to his fragile health. Want to make a difference for those with Epidermolysis Bullosa? Visit Doggie’s Friends to support Shane’s charity. https://give.cincinnatichildrens.org/site/TR/GivingHope/General?team_id=6519&pg=team&fr_id=1170&fbclid=IwAR1assquWaCOwFQECLz1xR-YnEZC1KmDkGOMu1QCaImi5nAJRrk5YIA5uhc Visit the website of the EB Research Partnership, and check out this appeal for support from Jill and Ed Vedder. https://www.ebresearch.org/ https://www.ebresearch.org/cause-the-wave.html

Hi everyone, Jim Swift, Senior Editor here at The Bulwark, Cincinnati Bureau Chief, and I am joined today by someone who's quickly becoming one of my favorite people, Shane DiGiovanna, who is also a Cincinnati resident. And if you're watching this video, go to The Bulwark right now, because if this video is up, I have done a profile, and I hope Shane likes it, he hasn't read it yet, kind of on Shane, who is a Bulwark Plus reader, OG as I call them, from the near that has unfolded in the, geez, has it been six weeks, seven weeks? I'm times a flat circle of the Trump administration. It's way worse than we thought. Things are happening way faster than we thought. And we're pessimists here at the Bulwark. We expected horrible, horrible stuff to happen. And unfortunately it's exceeding this

and people are worried. And Shane, you wrote this email. So tell me a little bit about the email that you had initially sent and kind of what prompted you to send that and we can kind of go from there. Yeah. So, you know, I have been a subscriber to the Bulwark for five years. You know, I love the Bulwark and, you know, I started reading The Economist when I was 12 years old. So, you know, the bulwark is kind of in a similar vein as to The Economist, same kind of, you know, conservative but principled conservative.

And, you know, so I, you know, love the bulwark, always have. And my email was basically about the chaos that's happening in the federal government and how that will affect health care for the most vulnerable, you know, the integrity of medical trials, whether medical trials will even have the funding to go forward, And not only that, but the impacts on Medicare and Medicaid, and how that can affect some of the most vulnerable among us. Yeah. And so when I read this email, I mean, our inbox has been on fire. And this was, you know, now we have federal employees, many of whom are being fired, many, many illegally. And we're just getting all these messages. And this note comes in from you. And it's just well written. It's, it's succinct, which is something I your journey, as you told me, is you were not born here in Cincinnati, which is one of the best children's hospitals in the world. And just strange quirk of fate through your dad's work brought you here. And you were born in North Carolina.

And you, just from birth, it's recessive dystrophic epidermolysis bullosa. Did I get it right? Epidermolysis belosa. Did I get it right? Epidermolysis belosa, but no worries. Nobody knows how to pronounce it. So we just call it EB. Okay. Well, we're going to call it that here for the rest of the show so I don't struggle with it. But I've typed it a million times and researched it in meeting you. And so this is a genetic, they call them orphan diseases, right? Yeah. So EB is a very, very rare genetic disorder. Basically, I am missing a protein called collagen-7, and that acts as the glue between the different layers of the skin. And so without that glue, my skin is extremely fragile. I have open wounds all over my body.

I'm missing probably 50, 60% of my skin. And so I have bandages all over my body. I don't have any functional hands. I am very limited in what I can do. I'm always in a tremendous amount of pain. But I am incredibly lucky to live near Cincinnati Children's, which has one of the very few centers devoted entirely to my genetic disorder. And thanks to them, I've been able to do a lot of things. Yeah. And in my research, you know, you had said, and you know, it's kind of maybe hard to judge this though, as you know, the cases are so rare that you are, I mean, among many of the first you've had, you are the first person afflicted with EB to go away from for college and graduate. Most people are kind of homebound. And you and your mom and I

and my friend Aaron, who did the great photographs for the story. You know, you went away to rice, and you know, your mom just kind of relived, maybe that the trauma, but kind of relived some of the scary experiences that a parent, you know, would deal with, you know, knowing that you're you're away from them. And you told me you were a bit of a party animal and maybe developed an affinity for jello shots when you were there. And this was, you started there right before COVID at Rice, correct? Which is an amazing school. Yeah. So I started in 2017. And so basically, you know, I am dependent on very high quality home health nursing. Without that, I just simply can't really survive, basically.

Like, for example, these days, I have to have 24-7 nursing, very highly skilled. Otherwise, I would have to be in the hospital full time and that's just not sustainable. Back when I was in college, I was a little bit healthier. So I didn't need nursing all day, but I definitely needed it for about 16 hours a day. And it was very, very difficult to set up the nursing system that I needed all the way down in Houston, away from Cincinnati. And it was very touch and go, very dicey. But despite that, I made the most of it.

I had a wonderful time in college, graduated with a degree in economics. And I went to a lot of parties, had a lot of fun, learned a lot as well, you know, worked hard, partied hard. But then one of the issues with my genetic disorder is that if you are lucky enough to survive puberty, to live long enough for that to happen, you start to have an incredibly high risk for a very, very aggressive form of skin cancer that can grow in a matter of weeks,

not years or months, but weeks. And I have been battling cancer for actually— That's squamous cell carcinoma. I can do that one. Yes. It's actually in next week, or actually in a couple of days, maybe Friday, is the fifth anniversary of when I found my first cancer. And that really just hit me like a truck.

I had to have massive surgery. And then I had- And that was during COVID, right? Like you flew back to Cincinnati. The world was shut down. Non-elective stuff was shut down. And Cincinnati Children's was able to take you in and deal with that pretty quickly.

But you also told me that if you don't notice these things, they really just have a tendency to spread much quicker than anyone would ever imagine. Very quickly, yes. And so, you know, COVID was terrible for, you know, pretty much everybody in the world, but it was kind of life-saving for me because I was able to get the surgery very quickly. And, you know, if it was just that, then, you know, I would have been able to do a lot more. But the issue is I've had cancer again and again and again and again. I've had cancer on my back three times, on my hand also three times, and on my left foot, twice. And so, you know, I've been on immunotherapy, which is similar to chemotherapy, but helps, battles your cancer with your immune system, but totally destroys your body.

Yeah. I was on that for about a year and a half until I just couldn't handle it anymore physically. I've had some more surgeries than I can count to excise all of these tumors. And basically, the sad thing is each cancer just hits me like a truck, and I get weaker and weaker after each cancer. Yeah, it's sort of the parabolic paradox of walking halfway to the wall, but unfortunately, we all get there. You told me how painful these surgeries can be with having to remove all of basically the skin that you do have. I think you said something that's like 80% of the way to cancer, and just kind of sometimes needs a little nudge and then it can start multiplying and then they're having to take that off. So not only do you have the kind of unrelenting pain that you deal with day to day when things are going in a good direction, you then have this that you have to deal with and also heal from. I know that you are a big space fan. And you, early on when you were younger, you said, I think your first word was airplane? Yes.

Right? And you wanted to work for NASA. You've gotten to do a whole bunch of fun things like fly wait lists. You go to see the Mars rover. You've met astronauts. People have been on the moon. Did you think your mission to Rice was kind of like a space mission on Earth in terms of like the logistical feats and how risky it was? Yes, it was very much like that. It came

pretty close to beating Apollo 13. Let's just say that. Oh, man, great movie. One of the things I was struck by in talking with you is, um, your, your worry is in a lot of, in a lot of times, and this is just human nature, people are always worried about themselves, right? Um, how is this going to affect me? And sometimes, you know, I mean, that's just human nature. Sometimes it gets into a selfish area and that's definitely not you, but the, the, the original thing I got in your first message and then, and having spoken with you at your

house and talking to you is a lot of your worry is for the next generation. Because, you know, I mean, there have been advances through privately funded and maybe some federal research that we talked about with Vijuvic that has helped with the skin on your forehead, correct? Yes. And you were part of that trial. Tell me a little bit about that. Yeah, so Vijuvic is really kind of just the first step towards a cure for my genetic disorder. There is no cure right now. Vijuvic really is just the first step.

It can help with really one wound at a time. And it's horrifically expensive, but luckily insurance covers it for now. You said it was like a used car a week. Yes. You know, like... It's the price of a used car a week, and it's been really, really helpful. But it's definitely just the first step. It's not a systemic cure, not yet.

And so the thing is, is that it's just the first step. And really, even if there was a cure right now, it would be too late for me. The damage is already done with me. I already have been battling cancer. I'm missing most of my skin. The damage that's been done to my skin is just beyond repair, far beyond repair. to fundraise for years for more research and research for a cure uh but it will help kids who are born today but not me yeah and you know that that's what i was i was struck i mean there's so many impressive things i mean uh you were reading carl sagan at seven reading the economist at 12 i mean like i thought i was a nerd for reading the Weekly Standard and National Review when I was like 15. But that's nothing compared to your love. And part of it was because unrelated to EB as you can. But it allows me to hear well enough for me to have a conversation with you. Well, and I mean, you're an excellent and very good conversationalist. And I say this, not to be too flattering, but in working in news, there are some people who make their living in this business, and they're surprisingly bad at communicating.

I'm not even very good at this, but I've had to take training, and you're just a natural. You told me about Ohio Valley Voices, which was a school here. It is a school here in southwest Ohio. Being from Cleveland, I'm so used to saying northeast Ohio. It's just muscle memory there. But Cincinnati Children's had paired this and you were at a young age when this was discovered. And when you came to Children's, it was just sort of one after another how great they were and giving you the shot that a lot of people afflicted by EB, you know, we're not lucky enough to have. And you told me a little bit about how much that school meant to you in developing your love of language, knowing that

another genetic trait you have is a love of news, which comes from your mom's father, who was a, well, he was like the bureau chief for a news, you know, over the radio station in Boston. And so he loved the news. And, you know, I never met him. He died before I was born. But I always feel a bit of a kinship with him, because I feel like we would have really, you know, liked each other. I bet. I bet. And that, you know, led to you going, I mean, Cincinnati has wonderful colleges since UC and Xavier. I didn't want to go to college where I grew up either. So I went away to college, but I mean, you pulled it off and then you had this first cancer and that's kind of now really the outlook for you to constantly be on the lookout for SCC constantly

to knock it down. But as you know, you're getting hit by a truck every time it comes up, and you really have no control over it because the cells just happens. But the selflessness of your first message and researching you before reaching out to you and just kind of being impressed, I mean, there are young people your age who read the Bulwark, but they tend to skew older. And so not only was I surprised that it was a response to one of our newsletters, and I looked at your account, I'm like, he's been with us the entire time, which meant that you'd be like 21 or two when you were first paying for the Bulwark, which we're very appreciative of. And you've been a great salesman of our work to me. No one's around and you're selling bulwark subs for me. It's a natural

salesman. The current moment, though, very serious. All of the destruction that we're seeing, the chaos at NIH, at Health and Human Services, now we're seeing that the new acting director of the Social Security Administration is going to start making changes there. And it used to be that no one, the third rail of American politics was entitlements, Medicare, Medicaid, Social Security. And, you know, Bush tried to propose privatizing it, and that was thoroughly rejected. Now we have, you know, Elon Musk and his 19-year-old Canadian wonder boys just like getting full access to these systems and just canceling things at will. And, you know, your worry, you know, of course, there are ways it can currently affect you. But I always kind of read your worry as looking out for the next generation of EB patients.

And that to me was just so selfless. Yeah. So basically, I mean, I've been fundraising for research into EB for years. And really, you know, the dream for everybody with EB is a cure. And as I said, it's too late for me. But, you know, there are kids who are born today or who will be born in the years ahead who are missing large amounts of their skin, who are going to have, you know, who are going to suffer from malnutrition and a million anemia, general bodily inflammation, all of these issues that spin off from EB.

And, you know, it golden dream is a cure, and there's, you know, multiple treatments that are currently in the pipeline in the FDA. Not a number of folks here yet, but, you know, I care about making sure that the next generation of EB kids can finally achieve that dream and that there's a cure and that the amount of suffering can be reduced. And hopefully one day nobody will have EB. Yeah, one of the things in the pipeline that you had mentioned to me was at Stanford, a

lot of the research goes on at Stanford about kind of printing skin that is made from their genetic material so it wouldn't be rejected because you know you can't really easily graft other people's skin on without risks um a lot of the money uh comes privately from i think you told me eddie vetter has an interest in this because they his wife had a childhood friend who has a son who was afflicted with it um and then a wall Street banker who's really kind of going aggressively and unfunding it. So if people have a lot of money, they're definitely EB. They've consolidated the kind of EB charities it looks like. So that's one way people can help if they want to donate a lot of money.

So if you have lots of money and want to donate to help EB, definitely charities to do it. But one of the things that you've been really successful about that I want you to kind of touch upon on a way where people can make a difference because everyone wants to make a difference. And I think a lot of people, you know, I don't want to poo poo that I don't want to underestimate human potential, but oftentimes people's assumptions are about how much they're able to change are outpaced by reality. So if you want to tell me a little bit about your charity,

which has raised over a hundred and some odd thousand dollars in a little over a year, pretty much guaranteeing it's going to be a legacy that you have. Tell me a little bit about Doggies Friends and how people can help there, because that to me was just, hit me right in the fields when i found out about it yeah so doggies friends is a charity that i started

um and basically the idea is well here hold on this right here this little guy um it's doggy i've had him since i was six months old. And he goes into every single surgery with me. And I, you know, I have another surgery in a couple of weeks and guess who's coming with me? How many are you up to now? You're over 150. Yes, I stopped counting a very long time ago, but it's more surgeries than I can count, more surgeries than anybody should have, but Doggie has come with me for every single one, and really the idea, I mean, Doggie has always been a comfort to me, and not just a comfort in a cuddly stuffed animal, but the idea is, you know, doggy has been my companion my whole

life uh he's more important to me than just about anything uh you know when you're suffering with eb or some other horrible genetic disorder um it's a very lonely experience. Nobody's going to understand what you're going through. Your parents won't. Even the doctors don't necessarily know because obviously they're not experiencing it. And so if you have a stuffed animal that you can love and cherish and provide comfort. And Doggie, when I was growing up, I always felt like he understood what I was going through. It's kind of a lot like Calvin and Hobbes. And Hobbes understood everything that Calvin was going through.

And it's kind of like that. And so what I want is doggies friends. I want to make sure that every kid who has EB and goes to Cincinnati Children's has a doggie that can provide them as much comfort, hopefully, as Doggie has given me. Without Doggie, I would not have had the strength to make it this far. When you're suffering with EB, it's an experience that tries to break you every single day of your life. So Doggie has given me an enormous amount of strength over the years. And as I said, EB tries to break you every single day.

And I've seen what it's, what it's like when, uh, EB breaks somebody. I've seen the look in other kids' eyes when, you know, the EB is just too much. And it, um, you know, it's know, it's a physical battle, obviously, to survive with EB, but it's also a mental battle and an emotional battle, and Doggie, you know, is a source of strength, a source of comfort, my best friend, always has been, and Doggie's friends is all about making sure that other children have that same strength and comfort and, you know, cuddly best friend that they can rely on. And, you know, I've raised over $100,000, which means it's going to be endowed, which means that it'll be my legacy.

You know, my life expectancy is not that long. You know, I'm battling cancer, and every time, you know, I've been lucky in that my cancers have been operable and able to be removed, but there's always, you know, but then there's always the neck surgery and the neck surgery, and my body is declining rather significantly and at a rather decent pace. I'm a shadow of what I was five years ago. And so Doggy's Friends is my legacy.

I want to make sure that after I'm gone, children will continue to benefit from what I've done. If Doggies Friends can help even one child as much as Doggies helped me, then all of my suffering will have been worth it. That's amazing. And we're gonna put a link uh there's gonna be a link in the story that when you when you you should have already read the story if you're at this point in the the interview uh but there's a link in the story there'll be a link here below in the video uh if you're looking for a small way to make a

difference just sending a few dollars uh could you know, really help make Shane's day and more, you know, more importantly, touch the life of someone you don't even know. A little stuffed dog could kind of be their lifelong, you know, best friend kind of, so to speak, they're, you know, a strength partner, many, many things. And, you know, if you're looking for things to do, that's one thing where you can know you have made a difference um a lot of times you're just trying um so definitely do that and you had told me um particularly uh going into the 2024 election that uh that was your goal like you saw jimmy carter and you were going through some tough times and you're like i want to make it to the 2024 election and you did and that's great and i'm glad that you did because i would not have met you if you didn't. And we would not have been able to meet each other. And you did. And the results sucked. Here we are. And now your next goal is the 2026 midter elections. So, you know, three years ago or whatever it was, I actually had a surgery scheduled on election day 2022.

And I told my surgeon, no, I am not going to accept that. Please move it to another day so I can watch the midterm results come through. And, you know, that's just how much of a nerd I am when it comes to elections. So my goal is to make it to the 26 elections. Hopefully we have a better result. And yeah, so, you know, my goals are basically defined by elections. Well, you know, we will look forward to seeing your contributions in the comments section. So if you see Shane's name in there, do say hi to him in the comments as we have these

very long two years ahead of us, not just politically. And, you know, Shane's always on SCC Watch and we'll be thinking of you. And I really appreciate you making the time. Go click the link. Send a couple bucks to Doggy's Friends. Help make a kid's day. really appreciate you making the time. Go click the link, send a couple bucks to Doggy's Friends, help make a kid's day. Shane, thanks for the time, buddy.