cure thyself. a local doctor studied medicine to cure cancer after his mother lost her life from the disease. now he's hoping to cure himself from the deadly condition. so far, so good. time to hit the beach with a book. but what to read? a local librarian suggests some page turners you won't want to put down. nbc's megyn kelly has a strong philly kevin. she and her husband sit down with nbc 10 to discuss her new show and her favorite philadelphia hotspots. >> announcer: "nbc 10 @ issue" starts at issue. good morning, i'm erin coleman for "nbc 10 @ issue." a local doctor has been dangerously ill five times, the result of a rare form of a rare

condition called castleman disease. it could take the doctor down again at any time. unwilling to wait for others to find a car, the young doctor decided he would do it. he is finding success for himself and others. castleman disease is not cancer, but it can be as deadly. it affects the lymph nodes and causes them to overgrow in a way similar to cancer. most who have it are successf successfully treated with surgery. more serious cases are treated with chemotherapy or raid i can't guess radiation. for them, there is no cure. thank you so much for being here. you became a doctor because of your mom, tell me about that. >> i lost my mom while i was in college, the most challenging experience of my life. at that point i decided to dedicate my life to become a

doctor in memory of my mom, become involved in medical research. i'm on this path to honor my mom. i became ill, and within a short period of time i was in the icu, the same hospital i had been treating patients at. every organ i had was failing. i even had my last rites read to me in 2010. fortunately i had chemotherapy but i've had some relapses since then. >> tell us about castleman's disease and how you discovered you had it. >> i was totally healthy and over the course of a couple of weeks experienced flu-like symptoms, weight loss, abdominal pain. the hospital said your liver, your kidneys, are shutting down. they didn't know what it was. they hospitalized me really quickly. i had a retinal hemorrhage, went

bind in my left eye. finally i was diagnosed with this mystery of a disease. finding out i had castleman disease didn't answer all that much because little is known about castleman. it's been quite a journey trying to figure the disease out. >> we say it's similar to cancer but not cancer. >> my subtype is called idiopathic because we don't know what causes it. so we don't know if it's an auto immune disease or if it is a cancer. there are many features that are cancer-like. a third of us will die within five years of diagnosis. another third will die in ten years of diagnosis. it can be more deadly than lymphoma. >> what was it like, becoming the patient after you were the doctor? >> it was challenging for sure. to switch roles and become so helpless. i mean, i was awake for so little of the day, when i would be in icu. i shared my first experienced when i was here at penn, i went on to have four relapses over

3 1/2 years, many months in the hospital. so i oftentimes didn't have my own voice, i was not awake for much of the day. my now wife, then additiongirlf was there supporting me. she and my family were talking to the doctors for me. in 2012 i decided to dedicate the rest of my life, however long that would be, to try and cure castleman disease. since then i created the castleman disease collaborative network, an international network. i started conducting research at penn along with my colleague, arthur rubinstein. we made incredible progress. when first diagnosed, the medical community had the disease upside down, they used to think these enlarged lymph nodes were turning on the immune system and the immune system was

causing problems. what we found out is it's the immune system being on that caused the lymph nodes. we know it's an immune system problem. based on that major finding, which we published back in 2014, and based on some research i did at penn, i decided to try a drug on myself that had never been used on castleman before, i started myself back on it in january of 2014. it's been almost 3 1/2 years with no remission. i had all five of my hospitalizations and flares in the first years and haven't had them since then. we've made really exciting progress, in my case, i'm now doing better than i ever have before. but we've got a lot of work to

do. we've got to figure out what causes the disease. how do we stop it for everyone? i'm one of thousands diagnosed each year. we've been able to make some exciting progress. >> that's got to be scary, here you are at the pinnacle of health, great, then all of a sudden it come kind of hits without warning. >> without warning. that's how it is for all of us with this disease, totally healthy. i was 25 at the time, a good friend of mine was 40 when he was diagnosed. another good family friend was 5 years old when she was diagnosed. this disease affects individuals of all ages. about 5,000 patients are diagnosed each year with castleman's disease which is about as common as als, and i'm sure viewers have heard about als, and they need to, it's an awful disease. there are also diseases like castleman disease that are equally as rare, equally as deadly. >> did you ever think that, you know -- i'm being a little ambitious here, there hasn't been a cure yet.

what makes me think that i can do it? did you ever think that, and did you ever think, i'm going to try, i'm going to do this? >> back in 2012 when i told my wife and family that i would dedicate my life to cure the disease, i didn't necessarily think i would be able to make the progress we made. i wanted to go out swinging, basically. i wanted to put everything i had into fighting this thing. for me, that would have been the best you can do, right? but fortunately, we've been able to make some progress. and the reason we've made progress is because there are a bunch of philadelphians who have been a part of this fight. we've got a group of warriors from all over philadelphia, business leaders, young professionals, medical professionals, that come to our annual gala. they get involved in our events. this has become a philly fight. our headquarters are here at penn. we're a global initiative. >> what's the next step? you're focused, you're in on it. what's the next step?

>> we've got ten studies currently going on, all being led out of penn right now, with folks around the would. we've got to get those studies across the finish line. almost all of them are fully funded. we need funding to cover the last couple of them to get us across the finish line. something really important is that i'm doing really well on this drug. a few other patients have been started on the drug. but for doctors to really try this drug there needs to be clinical trial didata. so at some stage we need to move forward to a clinical trial, then physicians will trust that this is a great option for patients who don't respond. there is one fda-approved drug, it works for a third of people. unfortunately it doesn't work for me. we want a second option for those who don't responsible to the first. >> what can you suggest for people who aren't doctors who have a so-called orphan disease that doesn't get a lot of medical attention? >> is there a foundation that's already doing great work, and if

so, join up with that foundation. a lot of times people start foundations and groups can splinter. it's so much better when you're all working together. in castleman's, when we started the collaborative disease network, we joined another large foundation that existed, because you have to work together. if you have a rare disease, you have to collaborate. that's the only way we can make progress. >> great job in doing what you're doing. i'm so excited that you guys are moving forward and good luck in the future, doctor, thanks for that. >> thanks so much for having me. next on "nbc 10 @ issue," what to read when you hit the beach this holiday week. suggestions for everybody from a local librarian.

many of us will hit the beach this week, book in hand. whether your plans are to go down the shore or relax in your own backyard, we have some suggestions for what you may want to add to your reading

list. with us now is the librarian from the free library of philadelphia. thanks for being here. >> thanks for having me. >> "meet me by beach comber bay," why this? >> this is the ultimate beach read, you don't want to think to hard and you want a happy ending at the end. she's written a thousand books, well, like 18. this is her latest. it takes place in a small town in cornwall in england. basically every character in this town is a character in the book. you've got someone who met a guy by chance on a plane three years ago but he's married, but three years later he comes back, but there's still complications. >> i love it already. >> and her best friend has found the perfect woman but he just can't get in there, he keeps doing stupid things. there's adoption, racial issues, a bunch of stuff going on. it ties up in this great happy

ending, it's like popcorn for the brain. if you like those cozy british soap-opera-y romances, this is for you. >> the next you recommend, "radium girls" by kate moore, nonfiction. >> nonfiction, not a happy ending. this is if you like "hidden figures" and want to know more about marie curie who discovered radium, people wanted to use it for everything. they would paint watch faces so they would grow in the dark. but then they all start getting sick. and so it really starts talking about what's going on, and then the company is taking no responsibility for the fact that they've basically poisoned all these women. this is during the first world war, it talks about these girls, what they do, why they're doing it, what's happening to them. and this huge legal fight to get

the companies doing this to take responsibility for the fact that every girl who did this died from radium poisoning. it's kind of a downer compared to the first one. but fascinating. >> very interesting. you also love "blackout." >> for the people who like suspense. it takes place in europes, the power goes out, the electrical grids go down. at first it's like, yay, the power is out, let's get out the flashlights. but the cooling for nuclear plants goes down. it follows an ex-hacker who tries to figure out what's going on. because he's a hacker, he's a suspect. him and an american journalist based in paris are racing around europe trying to figure out what's going on before everything collapses and how much we do every day that relies on electricity, and when it disappears, how fast it starts

affecting everything. it's like dan brown. >> i've read some dan brown on the beach. "wicked wonders," short stories, science fiction and fantasy. >> a lot of times you don't have time for a whole novel. short stories are perfect. ellen klages is fantastic at exploring wonders in everyday life. some of it is science fiction, some of it magical realism. it's like a little girl who identifies with maleficent rather than sleeping beauty. she's identifying with the wicked witch rather than the he he he heroine. there's everything else that goes into it and it turns into

almost a murder mystery. and her writing is beautiful. if you like the whimsical kind of normal rockwell with a tryst. >> great thing to bring along, then. "gentleman's guide to vice and virtue," this one is for teens. >> this is crazy, a road trip highest movie sent in the 18th century with highwaymen and pirates. it is a male/male love story, this guy got kicked out of school doing one last hurrah around europe taking his sister and his best friend who he secretly has had a crush on for years, but nothing's really happened, but now they're on the run. so what's going to happen? alchemy, there's some alchemy

there. it's like full on, this book is hilarious. >> can we find these brooks at the free library of philadelphia? >> you can find them at the free library. >> thanks so much for being with us. next, nbc's megyn kelly hit town with her husband this week. we'll talk to the couple about his new book and why they're so connected to our area. >> we hang out in the suburbs where doug grew up. we like the willows, darby creek. we sort of are trying to get out there with our kids a lot.

taking a break from endless political bickering, that's one of the reasons megyn kelly made a major career change. kelly and her husband were in philadelphia recently and sat down with nbc 10's jim rosenfield. she shared what motivated her to reassess her work/life balance when making the move to nbc

news. >> welcome to philadelphia. >> good to be back in philly. >> you have a novel that's out, a sports-centric kind of book. but parents can relate big-time. if they have young children in sports, if they've gone through that process. >> the main character is a tennis player. tennis at the extreme of youth athlet athletics. it's talking about our shift around the parent culture around youth athletics which has grown so intense, with traveling sports teams for 8-year-old kid, and the family commitment to youth athletics, it's gotten so intense now. this book explores that, this shift in our culture. >> and the consequences of living that life for both the parents and the kids. >> the early single sports specialization can be an intense and limiting way to grow up. i love athletics, i want our kids to have an athletic

experience. but it shifts from teaching kids values and discipline to being an inhibitor to personal growth. >> i think it's over the top now. i think it's just the beginning of a backlash to that. we have a friend who runs a very well-known bank, who was telling us a story about how parents of the young bankers are calling him to complain that their young children who are 30 are being given too much work. it's absurd. then don't go work on wall street. we all make choices in life. i think the backlash to the coddling we've been doing may be resulting in another backlash of its own. >> you're here in philadelphia, welcome. i don't know how many times you've been here, maybe with the husband, many times. >> love this place. number one thing i love is the barnes collection. spectacular. gorgeous. doug introduced me to it. we saw it at the old location, we followed the controversy. love it wherever it is. but we hang out in the suburbs,

which is where doug group up. we like the willows, we like darby creek, we love shana clear, we like to get out with our kids a lot. there's so much to do here. where do we get the stromboli from? >> conastoga. >> the kids are how old? >> 7, 6, and 3. >> good luck with that. >> that's why he wrote this book, trying to save them. >> it will be interesting to see if they wind up living any part of this life that you write about and preventing that from happening. >> it started a conversation in two areas. one is around this push to stop early single sports specialization. there are organizations promoting more free and fun play for kids. >> i would say it's calling for a pause. if you read the book, you walk away thinking it's time for a pause, just to sit back and think about the way we're raising our kids. because i think as parents in

this society today, we've become like the boiled frog. suddenly it got hot without us realizing. you give up your weekends, your evenings, your kids give up weekends, if he wants to play college sports you have to get him in now, and before you know it, all your time with your kids is gone. i don't think it was a conscious choice by most parents, they just went along because that's what you did. >> let's talk about the level of ramped-up rhetoric that we see in general when it comes to not just politics but in other parts of our lives now. the discourse that happens between people who may disagree on a given subject and how it ratchets up from zero to 60. of course we've seen that in the political landscape. but it seems like it's spilling over into other conversations where you're sitting around maybe at a dinner table or dinner party or restaurant and

people go at it. what do you think of that kind of way we seem to be handling each other and our differences? >> i think it's depressing. and i think it's one of the reasons why i wound up writing my book, and the choice to settle for more, because i want more for myself in my life than that. one of the reasons why i changed jobs, because i didn't want to be mired in political vitriol which is the nature of cable news. and it's one of the reasons why we are both doing what we're doing, stopping, taking a look at our family, how we're raising our kids, how much time i'm spending with them. you know, what we want for them, what we want for the five of us, is to withdraw from that sort of vile nastiness and try to forstr more love, more human connection, more time with our children and each other. it starts at home. >> thanks so much for sitting down with us.

>> kelly's show, "sunday night with megyn kelly," is off tonight but will be back in two weeks, only on nbc 10. doug's book is out now, "trophy son," in bookstores and on the web.

it's pay what you wish day at the philadelphia museum of art. just one of many events during philly's wawa welcome celebration. once at the museum, stick around for a free flick, "rocky" will be shown on the big screen on the steps of the museum, where else? if you can't be in the city to see the fireworks and other events in person, catch it all on nbc 10 and telemundo 62, we're the official wawa welcome america station. that's all for this edition of "nbc 10 @ issue." thanks for joining us. have a great sunday. (female announcer) the following is a paid presentation for crepe erase,

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