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Episode Info: gene carrier and one day know that I'm going to end up just like my mom just slowly deteriorating both physically and mentally and not much I can do at the time. Janet:                                05:00                   So is it a given? If you have the gene, that's it. Seth:                                  05:05                   That's it. Yeah. I mean, unfortunately, that's how it is. And what's unique about Huntington's disease is that they can test it, they know where it is, but it's such a unique gene that you would think that they'd be like, here's how we cure it, but of course like any rare disease is a lot tougher than just saying, hey, we're going to pull it out or do something like gene therapy or DNA silencing and hope for the best. But at the end of the day, Janet, it's a 100 percent. Given that within maybe 15 or so years I'm going to start developing symptoms and there it is. Janet:                                05:47                   You were a very young man when you were brave enough to get tested. But I understand you also didn't share that information with very many people. Seth:                                  05:57                   Yeah. That's something I wish I did and I think the challenge was knowing that my mom was still alive and didn't want to put more on her plate. I didn't want her to suffer even more than she was. My Dad being a caregiver, not wanting to worry him, put an additional load onto him. And then having an older sister, I felt like she may feel the pressure to also get tested. So I actually only told a few friends and over time felt a little bit more comfortable telling more and more friends. But telling my family was very tough and it, it was challenging because I value family a lot and I, I was trying to do what's best for them and not having them worry about me, which again, it's, it's a difficult point because it's your family and you want, you want to be open with them, but at the same time you're like, , well how much do I share with them and how comfortable am I going to feel afterwards? Janet:                                07:02                   And that's kind of where I was at at the age of 20. And it actually took about three years. I really thought it took about two years when I had to like trace it back. And I'm like, wow. Actually took about three years until I told my Dad and my sister and then told my family. And I did this TED-X talk earlier this year in January. And it was like what I mentioned, there's coming out of this like genetic diseases closet where I was open about it and I just felt like I didn't have to hide that big secret. Have you ever been ever had that like big secret or like a secret that you're like, you just can't share with anyone or are you just not sure how people are going to react? Janet:                                07:38                   Well and it's also the fear that that gets built out of proportion about how people are gonna react. You spend so much time thinking about how they're going to react that sometimes it's nowhere near as bad as you imagined. Seth:                                  07:51                   No, absolutely. And that was it. I, I figured if I was to tell them, my Dad first off might try to talk me out of it and saying, "Oh why do you want to get tested so early?" And I knew this is something I wanted to do because similar to my Mom, I would maybe drop my phone or forget a conversation or something that my friend just told me and I would think, "is this Huntington's or is this just me being a 19, 20-year-old college student who just happens to do this?" And so it was just mentally draining that I didn't want to live with the unknown. I like to plan ahead. I'm definitely one of those planners. So I wanted to know what my future held. And again, like you said, Janet, it's something that, I didn't know how people react, but I also emphasize the importance of making this decision on your own because it is a very personal decision. Janet:                                08:49                   I can't imagine what it must have been like, not to tell. I'm sort of known as not being able to keep a secret in my family that I feel like people ought to know things. So I cannot imagine keeping a secret for two to three years about something like this. But what I'm really curious about is. So you actually have identified that you have a life-terminating disease, an illness that has no cure. Are you talking to medical professionals? Are you talking to other people who have the condition? Who do you confide in because that sounds like a really big burden for your dorm mate too. Seth:                                  09:25                   It definitely is and for me again, I was very fortunate to have some good friends who were very supportive and if-if I go back in time I definitely would have told my family from the beginning because the importance of having that support system and making sure it had the right resources because I didn't go through genetic counseling, which again, I always emphasize when I do other talks about the importance of it because they make the process more manageable a lot easier. Nothing is going to be easy, but if you can make it somewhat easier, more comfortable, it does go a long way in the long run. Janet:                                10:04                   Can you explain what exactly is genetic counseling? Because hey, you got what you got. So what does that really mean? Seth:                                  10:11                   So also I'm going to open. I hope I do a good job explaining what genetic counseling is, but it's somewhat new compared at least to a lot of the main specialists, but it's done by a genetic counselor, someone who focuses on helping someone who has to figure out whether or not they should go through testing what their options were. Talking about family planning, talking about maybe life insurance or health care. So a lot of things, that we really, especially the young person, don't really say. I don't know. I never thought about, oh, should I get life insurance or long term disability care or family planning options. I originally just thought, well I can either have a kid or adopt. And then I learned later learned about IVF with PGD, which is a pre-implantation genetic diagnosis, which tests the eggs and makes sure that they're free of any genetic conditions. Seth:                                  11:16                   And then I also found out about the whole idea of like sperm donation. So, what's funny Janet, is I was doing this talk to genetic counselors and I mentioned the whole option of sperm donation that I found out from speaking with a genetic counselor and it got me thinking right away. I was like, well which of my friends are going to be willing to donate their sperm or do I go after one of our famous Boston sports, Tom Brady or Gronk or David Ortiz or someone like that and just say, hey guys, I know you don't know me but I need a favor. Janet:                                11:58                   Well, that's unusual and I'm not sure if there is a professional athlete for sperm donation organization, but maybe you should be the one that starts it. Seth:                                  12:09                   Yeah. I'm not sure how they would feel about it, to be honest, but I was just more of like the idea of knowing if there's any alternatives, what are the options? And honestly just counseling you to make sure that you have the right resources and support. So when I say support, I'm not just saying family, but also friends, maybe it's professional support such as a therapist, like high trust. And then with the resources, making sure you have the right educational content to social and emotional resources. Maybe it's some type of program or service you're involved with. Maybe it's connecting to a local nonprofit. These are a lot of things that I wish medical professionals did more of, which is simply saying, like here's your results, but here are some great organizations that you should reach out to for more help or here's, you know, I'm going to follow up with you in six months just to check in. Seth:                                  13:00                   These are like little things that I think go a long way because you know, when I, when I learned about it, I was a little lost. I didn't know what those next steps were at first. But as soon as I met some other people in the Huntington's disease space, I was like, I want to get more involved. I want to do more. And I used my results as motivation to fight back, to not give up hope. And that's kind of led me to my journey of where I've been doing all these talks. Especially this past year I've. I've lost track of how many different talks I've done, but I would say at least a dozen talks this past year. Janet:                                13:35                   How did you connect with people in the HD space? Seth:                                  13:39                   The first time I connected with someone it was because I ran my own throne through basketball charity event called hoops for Huntington's with one of my good friends and we would look into figuring out where the money's going to go and I got connected to a staff member for the Huntington's Disease Society of America and a national nonprofit focusing on HD and then from there I just started connecting with other people, but one of my friends, she told me about this national convention and how there's other young people and they had space and that kind of opened my eyes and say, oh wow. I'm not alone in this fight. I'm not the only young person who has to deal with the everyday challenges, but more importantly, I was always connected to older adults who had different needs than a younger person where an older adult adult may already have his career, his or her career, their family, a house where I have to figure out all of those things, plus how to cope with it in addition to like romantic relationships, personal family and friends, relationships, things like that where it was a lot easier to relate to someone around my age who understood what I was going through. Janet:                                14:55                   And now, you're a part of a more formal organization at the Huntington's disease organization. Seth:                                  15:02                   Yeah. So I now sit on the board for the Huntington's disease youth organization. What the young people call "HD Yo". Our mission is to support young people impacted by Huntington's disease worldwide. So we put on camps all over the world. We've done at camp in Europe. We'd done a camp in North America. We'd done a camp in Australia - New Zealand. But when, when I say youth, I mean more young people, so young adults. It could be up to the age of 35 years old and ultimately we, the organization was started because we saw that there was this missing piece where they're young people weren't getting the attention or the support they needed and we wanted to bridge that gap. We wanted to fill that missing piece, so not only do we provide camp, but we actually provide educational content on our website in 14 different languages. I was like, wow, that's, that's amazing where we can not just do it in English and Spanish and Italian, but now you know, potentially I think Chinese, a Dutch and German. Seth:                                  16:09                   I think in Russian it's just like all these different languages and then on top of that we also have a director of youth services actually in the DC area, but she's our Director of Youth Services in the US where she helps young people make sure they get the right support and resources and connect them to the right doctors and specialists and I think that's just amazing work that I never had growing up. I didn't have HD YO. I didn't have any of these educational content that I wish I had and said, I just googled, you know, what is Huntington's disease? And I think that's what everyone does when they learn about a new condition is they google it and then they see all these big words and they get intimidated and then they either try to learn more or they say, "wow, this is too much." Seth:                                  16:52                   I can't do this. And that's kind of where I was at his as. Especially as a 15 year old,15-year-old, , this is too much. I don't want to deal with this. I want to just enjoy my childhood. Which I essentially lost out on the whole idea of being normal, which is a whole. Just is not even a thing these days is the whole idea of being normal and it was definitely challenging. And, and so what my goal is, especially being a board member for HD YO, is honestly being that, having the opportunity to share my story, to inspire others, but also to connect people, young people to the right resources. So connecting them to the services we provide are making sure I can make sure I can connect them with another young person in their area or just making sure they know that they're not alone in their fight against HD. Janet:                                17:46                   I am wondering a little bit about the actual manifestation of the disease. So you obviously knew very clearly that you had the potential for having it because of your mother, but is that how most of these other young people are finding out that they are also carrying the gene for HD through family members or his symptoms? Wouldn't symptoms appear in as young as the teens or twenties? Seth:                                  18:15                   It really depends, Janet. I think their's is even a more rare form of Huntington's disease, which is the juvenile version. So how it works is everyone has actually everyone has like a Huntington gene, but there's the, what we call it, the CAG repeats your, your CAG repeats and when there's a mutation, that's when the Huntington gene can expand and then that's when you actually have the disease itself. So usually the normal gene per se is anything under, I want to say 26. It always, I feel like it varies every time I talk to someone knew about it, but usually about, I think I would say under 26, 27 is normal. And then there's this gray area. The gray area is a little confusing because it's like, I think it's, I want to say like 28 to 35, but like a section of that means that you have a 25 percent chance of showing symptoms later in life were another part is like, oh, you might still have a chance of showing symptoms, but more importantly this gray area is saying, you tested negative. Seth:                                  19:26                   There's a small chance that you might show symptoms like in your sixties or seventies, but like very little. But the thing is if you're in this gray area, your kids can still be at risk and I think that's a thing that's not addressed enough. Going through testing, it's either , you're positive or negative. So anything over, I would say 36 and above. I believe it's 36 or above means that you have you carry the gene. The higher it is, the more progressive it is. So this juvenile version is 60 or above, so I unfortunately I've had friends who are in the juvenile stage and they're repeats are in the sixties, seventies and the eighties. And it's tough. It's sad to see, you know. I lost a friend of mine, her name was Megan, at the age of 26 to the juvenile version of this. But what Megan really taught me, not to, not necessarily to grieve, but more to say, here's how you gotta live your life. Seth:                                  20:23                   You got to live in the moment and live with a positive outlook because that's what makes any situation a better one. And that really stuck with me after she passed away to make me honestly. She was one of the reasons why I wanted to share my story. It was because she was, even though she was struggling and dealing with the symptoms of HD, she's still shared her story. She still always had a smile on her face and that's what got me going. But essentially when people learn about it, learn about it because their parent has it most of the time. But the other challenging thing is how do you talk to it? How do you talk to a child about it? With my parents, for example, they just said, hey, your mom has Huntington's disease. It's a rare disease from what I recall again, but that was it. Janet:                                21:13                   And so that's something else that I think HBO is trying to work on. We have some staff as well as volunteers who have done a tremendous job on explaining, are working with people of how to talk to kids about HD. We actually have a fellow board member of mine, her name is Dr Bonnie had again, and I hope I pronounced your last name right, but she is. She wrote a book about how to talk to kids about HD, which I think is amazing. I think it can relate to other conditions of how do you talk to your kids about any rare disease, any genetic condition. Janet:                                21:45                   And that's so important. I think knowing how to communicate to children and children at various ages. You know how you would talk to a elementary age child is different from a middle or high school age child. You know, how much can they absorb, how much should they absorb, what, what is going to empower them to not live in fear and to have the knowledge they need is a very tricky thing and it takes a very good communicator to understand how to deliver that information at various ages. Seth:                                  22:18                   I couldn't agree more. I think it definitely, you have to communicate it. You have to be transparent. You have to be honest and that's the challenge is you don't know how someone's going to react similar to my situation wants to tell him. My Dad, my sister, they were fine with it. They were like, oh, you know, thanks for telling me. But they're just like how did you hide this? It wasn't like, Hey, I'm mad at you. It's like, oh, thanks for sharing. And they didn't treat me any differently. That's the biggest thing is there's a stigma behind genetic conditions in my opinion, where people don't know how others will react when you tell them and that's I think the difficult part is even having. I don't have children, but being a child of a parent I can relate to saying , like yeah, it was probably tough for them to tell me I'm glad they did tell me I wish they told me more, but now I can help other maybe parents work with figuring out ways to tell their children are making sure that these children wants to knowing about it, are these young people who know about it, that that they're provided those educational content and going to the right places for learning more about the condition. Janet:                                23:30                   Well, I understand that you've taken your condition, your passion and your desire to really impact others into your career. Seth:                                  23:41                   I have and it's pretty crazy because. Give you a little bit background. My background is in nonprofit work. I was doing a lot of work previously in youth development, working with under resourced students in Boston and then going to Grad graduate school in Chicago the last few years to get a Master's in nonprofit management and I really thought I would either be staying in Chicago, are moving back to Boston, working for a nonprofit. We're focusing on, especially high school students. I felt like that was kind of my calling of connecting with them, working with them, building that relationship up with them, but then again what happened this past year has been an amazing just experience. As mentioned before. I did this TED-X talk, sharing my story in front of 800 people in my hometown back in January and just kind of took off from there. Seth:                                  24:34                   I was able to connect with so many other people in the rare disease space. Understanding the needs of young people and then trying to learn about just different organizations and what they do to help support those impacted by rare chronic condition. And that's when actually I came across this company called Inspire who I heard briefly about in the past because they were doing some, this initiative called experts by experience where they would bring in people to share their, obviously their experience of living with a rare chronic condition and you know, next thing you know, I'm working for them. And to give you a background on what inspired does is where a social health online network connecting patients and caregivers to one another anonymously. And what's, what's cool is we actually have staff here who moderate our online communities, 24/seven. So you know, they're taking shifts, night shifts, morning shifts just to make sure to moderate for kind of being that, that online police in a way. Seth:                                  25:41                   So making sure people aren't potentially giving out personal medical advice. Any type of spam, any of those arguments that go back and forth. We think it's important for people to feel like they can connect with one another and know that they're not alone alone in their fight and we actually have over 100 different nonprofit partners and that's kind of where my role comes in as a partnership's manager is trying to build not only our current partnerships but new partnerships with these nonprofits so that we can build these online communities for their patients and caregivers to connect with one another. Again, that whole idea of being anonymous is something that I've learned more and more about, especially in this role of, you know, you can go to an Instagram, you can go to Facebook, go to Twitter, and I think it's great that there's different social media options, but I think what makes our site unique is that idea of being anonymous. Seth:                                  26:35                   Idea of having it moderated by professor, by our staff and we're kind of the experts on the online moderation. But that's why we bring into nonprofits because they're the ones with the resources. Making sure that they know where to go when they're looking for educational resources and content or even services that the nonprofit partner may provide. The biggest thing that I always stress is one, I'm not just trying to sell a nonprofit partner on on this, but more importantly, as you know, I've lived the experience. I grew up in a family impacted by the rare disease. I know what it's like. And so making sure that they're being able to have that opportunity to connect with others who know what they're going through. That's the, that's the biggest thing because I didn't, I didn't have anyone growing up until actually to be honest, until about the age of 19 when I was in college and when I was actually a sophomore in college, just turning 20. Seth:                                  27:34                   Someone who lived down the hall from me in my dorm, said, oh, my friends come and visit. And her mom also had HD. And as soon as I met her, I felt like I knew her for years because I didn't have to explain myself over and over and over again. She just knew. She knew what was going on. And it was just great to know that I didn't have to live in isolation. I had someone else I could talk to about this and of course that grew over time, but that's Kinda why I always say, hey listen, I'm not here to tell you just to do it to do it, but here's an opportunity for those who may want to connect anonymously, like a username, think of like AOL or AIM where you have that user name and then if you want to connect more you can message them or add them as a friend or, or just, you know, you can share more if you want, but it also gives them the opportunity to share as much or as little as you want. Janet:                                28:25                   I took a quick look at Inspire and I lift up Huntington's disease and I know that there's almost a one and a half million members of Inspire, of which 389 are part of the Huntington's disease community. So when you talk about it being rare, that's amazingly rare. What a great resource to put together people who need to find other folks like themselves. Seth:                                  28:52                   As you can see with the Huntington's disease community, it's a lot smaller than some of our other ones. And that's because of course Alan doesn't have a nonprofit partner yet. That's something in the works, but I think, you know, when you have that partner you can, they can also help drive people to it and make sure people know about this resource with Huntington's disease. There's 30,000 people in the US who have another 200,000 plus who are at risk. And so yes, I think Inspired is a great platform for Huntington's disease space with other as well as other conditions. But I think when you have a nonprofit partner is going to help drive more people and that. And that's something that I'm really excited to do, especially personally being impacted is, is trying to get potentially other people like myself involved in the conversations within that community on Inspire. Janet:                                29:57                   You know, one of the things that is happening in my household is that my son has and his father's side of the family have all gotten 23 and Me genetic testing kits now on my side of the family, on the Kennedy side of the family. My Dad's an avid ancestry researcher, so I can tell you that I've got family members that we've discovered all the way back to something or other and that's cool. And so we feel like we pretty much know and understand what's going on on one side of the family. On the other hand, on my son's side of the family, past great-grandfather. They know nothing. They don't know anything who were, when they came over. How many folks are they related to anybody in the world. And so I'm really fascinated with this whole experience and the things you can find out from that. So I'm curious since there's so many sales going on with all these genetic testing platforms related to the holidays, are you all gearing up in January for a lot of folks going? Why I have one getting ready for kind of a rush of people who are now going to start to wonder about some of the things going on in their holiday gift, genetic testing. Seth:                                  31:09                   I think that that's a great question, Janet, and with the whole 23 and Me and learning about your history of your family, it obviously has its pros and cons, but the challenge with 23 and Me and a lot of these other genetic testing kits is again, if you don't have that one to one service, have a genetic counselor. You're not talking to a specialist. You don't know what those next steps are. That's the biggest thing is when someone learns about a diagnosis or learning about them being at risk for something, you always wanted to look at, well, what's my next step in my journey? And if you can connect with other people who have either already gone through that journey or are going through the same path that you are timeless simultaneously. I think it definitely helps make things, again more manageable, but more importantly I stress on the idea of a jag counselor because again, they're going to help provide that support and making sure that you know what your options are, whether you have a jag condition or not. I think the other challenge, again with Huntington's disease, it's so unique that when you're at risk, I definitely think that it's important to go through genetic counseling because you could test negative, but you might have that survivor's guilt or you might test positive and not know what those what to do next and I really just don't know. It's a tough one to answer, but my thought is if you do decide to go through 23 and Me or ancestry.com or any of those other ones, just make sure that, once you do it, there's no looking back. You can't just hit the rewind button and say, I don't want to do this. I don't want to learn about additional potential conditions I may have or that was passed down from my family. So making sure that you know what, what to expect and know what your options are, not only after doing a book prior to doing it and kind of talking to others about your family, about it, maybe friends about it, professional about it, just so that you know what to expect when finding out the results. Janet:                                33:33                   I think that is such good advice and one of the things I do want to let people know is that in the show notes we'll have a LinkedIn profile and also a link to the talk that he did at TED-X Natick. I thought that was just a really, really interesting presentation and something that people I think really need to listen to because I liked the idea that you've said about coming out of the chronic disease closet. That idea that you don't have to keep this all to yourself. There are other people who can support and help you and don't suffer in silence. Seth:                                  34:01                   I couldn't agree more and Janet, the biggest thing is it takes time, but understanding that you aren't defined by the disease and being defined by who you are as a person. And I actually had one of my good friends, his name's Peter, he and I had this conversation because to be honest with, with dating, you know, when you tell them about your condition, do you say on the first date, you know, the six days, six months in, you don't know how they're going to react, but what he told me, he said, listen, you can't talk about it. It shouldn't. It shouldn't be part of your life every day. And, and it really kind of changed my perception of say he's right. Like even though I am doing these public speaking talks and I'm doing a lot of work in the HIV space, at the end of the day I don't need to tell them about it because, and I say that in a nice way. I'm saying I don't need to tell them that that's all I do and that I should be defined by Huntington's disease rather than who I am as a person. And it's really changed my perception on, looking at, at life differently, but it also just helped me understand that it's not about being perceived as, hey, I'm Seth with Huntington's was, hey, I'm Sam, I'm impacted by it, but here I am as this is who I am as a person. Janet:                                35:20                   That you are not defined by your disease. Seth:                                  35:23                   Exactly. Not defined by the disease and still trying to do great work. I mean, as as mentioned before, not only doing a TED-X talk, I spoke at global genes talking about the emotional toll toll a condition as a rare disease patient. I actually have spoken in front of genetic counselors, genetic counseling students and Undergrad and graduate. And also more recently I've, I've spoken in front of researchers. And I think that's the biggest thing is how do we bridge the gap? Getting the patient's voice more involved in research, listening to what our needs are and how we can take those next steps to speed up medical progress. Janet:                                36:04                   Well you are certainly on the right path and I congratulate you for the work you're doing and also for the passion that you're sharing with people because it is through stories that people will really connect with each other. Seth:                                  36:18                   Yeah, and I appreciate you having me on here chatting. It's just more of an opportunity not for me but just for others to know that they're not alone when dealing with their health condition and knowing that there's people like you and I out there who want to help others and make sure that they hear stories like my own or stories of others on the podcast and just hearing that, you know, even though there are challenges in our lives we're still trying to make the most out of each day and that we can always do more to help others out. We can always do more to make a difference in the health space. Janet:                                36:51                   Well, you keep at it, Seth, and I look forward to hearing some more about what you're up to in the coming years. You've been listening to the Get Social Health podcast. My name is Janet Kennedy. My guest today was Seth Rotberg and you can find all of his contact information in the show notes. Thank you so much for listening Announcer:                      37:11                   And now here's a social media success tip. Mike Sevilla:                     37:14                   Hey, this is Dr Mike Sevilla, family physician and physician social media pioneer and here is my social media tip. Now I got a question a lot. He said, "Mike, you know what kind of gear do you need to be a a social media superstar?" And I tell people it's not about the gear. There's three basic success tips I can share with you. One, you need a very cool social media mentor that you can ask questions to to. You need to have a message. What is your message? What do you want to convey out there in three, what are the goals? What do you want to achieve by being on social media? You follow those three tips, Success you will find. Announcer:                      37:58                   You've been listening to the Get Social Health podcast. The show notes are located at getsocialhealth.com. To join our healthcare social media journey, follow @GetSocialHealth on Twitter, and start a conversation. Janet:                                38:13                   Thanks for downloading this episode of the Get Social Health podcast. If you enjoyed our conversation, a review and a rating on iTunes will help us find more listeners. The Get Social Health podcast is a program of the Healthcare Marketing Network, bringing you the best in healthcare communications. Our network includes dozens of writers with a wide variety of expertise and a broad range of medical specialties. If you need blog, website, white paper, or patient facing content, let the healthcare marketing network be your external content engine. For more information, contact me, Janet Kennedy. My email is janet@healthcaremarketingnetwork.com.  ......
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