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 cant 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. Im 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 ive had some relapses since then. Tell us about castlemans disease and how you discovered you had it. I was totally healthy and over the course of a couple of weeks experienced flulike symptoms, weight loss, abdominal pain. The hospital said your liver, your kidneys, are shutting down. They didnt 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 didnt answer all that much because little is known about castleman. Its been quite a journey trying to figure the disease out. We say its similar to cancer but not cancer. My subtype is called idiopathic because we dont know what causes it. So we dont know if its an auto immune disease or if it is a cancer. There are many features that are cancerlike. 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 didnt 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 its the immune system being on that caused the lymph nodes. We know its 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. Its been almost 3 1 2 years with no remission. I had all five of my hospitalizations and flares in the first years and havent had them since then. Weve made really exciting progress, in my case, im now doing better than i ever have before. But weve got a lot of work to do. Weve got to figure out what causes the disease. How do we stop it for everyone . Im one of thousands diagnosed each year. Weve been able to make some exciting progress. Thats 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. Thats 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 castlemans disease which is about as common as als, and im sure viewers have heard about als, and they need to, its 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 im being a little ambitious here, there hasnt been a cure yet. What makes me think that i can do it . Did you ever think that, and did you ever think, im going to try, im 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 didnt 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, weve been able to make some progress. And the reason weve made progress is because there are a bunch of philadelphians who have been a part of this fight. Weve 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. Were a global initiative. Whats the next step . Youre focused, youre in on it. Whats the next step . Weve got ten studies currently going on, all being led out of penn right now, with folks around the would. Weve 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 im 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 dont respond. There is one fdaapproved drug, it works for a third of people. Unfortunately it doesnt work for me. We want a second option for those who dont responsible to the first. What can you suggest for people who arent doctors who have a socalled orphan disease that doesnt get a lot of medical attention . Is there a foundation thats already doing great work, and if so, join up with that foundation. A lot of times people start foundations and groups can splinter. Its so much better when youre all working together. In castlemans, 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. Thats the only way we can make progress. Great job in doing what youre doing. Im 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 dont want to think to hard and you want a happy ending at the end. Shes 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. Youve got someone who met a guy by chance on a plane three years ago but hes married, but three years later he comes back, but theres still complications. I love it already. And her best friend has found the perfect woman but he just cant get in there, he keeps doing stupid things. Theres adoption, racial issues, a bunch of stuff going on. It ties up in this great happy ending, its like popcorn for the brain. If you like those cozy british soapoperay 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 whats going on, and then the company is taking no responsibility for the fact that theyve basically poisoned all these women. This is during the first world war, it talks about these girls, what they do, why theyre doing it, whats 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. Its 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 its like, yay, the power is out, lets get out the flashlights. But the cooling for Nuclear Plants goes down. It follows an exhacker who tries to figure out whats going on. Because hes a hacker, hes a suspect. Him and an american journalist based in paris are racing around europe trying to figure out whats 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. Its like dan brown. Ive read some dan brown on the beach. Wicked wonders, short stories, Science Fiction and fantasy. A lot of times you dont 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. Its like a little girl who identifies with maleficent rather than sleeping beauty. Shes identifying with the wicked witch rather than the he he he heroine. Theres 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. Gentlemans 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 nothings really happened, but now theyre on the run. So whats going to happen . Alchemy, theres some alchemy there. Its 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, nbcs megyn kelly hit town with her husband this week. Well talk to the couple about his new book and why theyre 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, thats one of the reasons megyn kelly made a major career change. Kelly and her husband were in philadelphia recently and sat down with nbc 10s 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 thats out, a sportscentric kind of book. But parents can relate bigtime. If they have Young Children in sports, if theyve gone through that process. The main character is a tennis player. Tennis at the extreme of youth athlet athletics. Its talking about our shift around the parent culture around youth athletics which has grown so intense, with traveling sports teams for 8yearold kid, and the Family Commitment to youth athletics, its 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 its over the top now. I think its just the beginning of a backlash to that. We have a friend who runs a very wellknown 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. Its absurd. Then dont go work on wall street. We all make choices in life. I think the backlash to the coddling weve been doing may be resulting in another backlash of its own. Youre here in philadelphia, welcome. I dont know how many times youve 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. Theres 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. Thats 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 its calling for a pause. If you read the book, you walk away thinking its time for a pause, just to sit back and think about the way were raising our kids. Because i think as parents in this society today, weve 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 dont think it was a conscious choice by most parents, they just went along because thats what you did. Lets talk about the level of rampedup 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 weve seen that in the political landscape. But it seems like its spilling over into other conversations where youre 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 its depressing. And i think its 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 didnt want to be mired in political vitriol which is the nature of cable news. And its one of the reasons why we are both doing what were doing, stopping, taking a look at our family, how were raising our kids, how much time im 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. Kellys show, sunday night with megyn kelly, is off tonight but will be back in two weeks, only on nbc 10. Dougs book is out now, trophy son, in bookstores and on the web. Its pay what you wish day at the Philadelphia Museum of art. Just one of many events during phillys 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 cant be in the city to see the fireworks and other events in person, catch it all on nbc 10 and telemundo 62, were the official wawa welcome america station. Thats 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, the number one antiaging body treatment system for crepey skin male announcer that can deliver stunning results on your arms, your legs, your hands, your chest, and even your neck female announcer featuring legendary actress and crepe erase success story, jane seymour soft music crepey skin makes me feel. Old. cindy i am really sick of looking down and wondering what happened to me. belinda i feel like im missing out on life because of my skin. I want a change. 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