Seth Rotberg found out as a 15-year old that his mom had a rare neurological genetic disease known as Huntington's disease. Five years later, he tested positive for the disease. Today I'm talking with Seth about secrets, strengths and recognizing the power of community on Get Social Health.

Connect with Seth at the links below:

• LinkedIn
• Twitter
• Website
• TEDx Natick

Interview Transcript

Janet:                                00:01                    Seth Rotberg found out as a 15-year old that his mom had a rare neurological genetic disease known as Huntington's disease. Five years later, he tested positive for the disease. Today I'm talking with Seth about secrets, strengths and recognizing the power of community on Get Social Health.

Announcer:                      00:21                    Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health, brings you conversations with professionals actively working in the field and provides real-life examples of healthcare, social media in action. Here is your host, Janet Kennedy.

Janet:                                00:48                    Welcome to Get Social Health. My name is Janet Kennedy and I'm the host of the podcast in case you didn't know. Today I have a special guest on who is going to share a very personal story of his own health journey, and how he is using that experience and his situation to make the journey for a lot of other people. Seth Rotberg is a rare disease advocate and a motivational speaker and he's got a really amazing story to tell, so I'm happy to have him join me on the podcast today, Seth. Good morning.

Seth:                                  01:20                    Good Morning Janet. How's everything going?

Janet:                                01:23                    Well, as we spoke before, I'm getting over a little bit of a cold, so I'm going to sound a little funky to my usual listeners today. But it's a beautiful day in North Carolina where we have eight inches of snow. Also a rare situation.

Seth:                                  01:38                    Yeah. Well, I can't complain myself. Being up north in DC, you know, it's nice and warm here. I think 30 degrees?

Janet:                                01:51                    You are in Washington DC now, but you are a Massachusetts boy. We were talking about both sox and teams up in the Boston area. So tell me a little bit about where you grew up.

Seth:                                  02:09                    Well, first off, I do have to say it's exciting to grow up with a lot of gray Boston sports, especially with the Red Sox winning the world series this past year. I grew up about 30 minutes west of Boston in a town called Natick and I'll just jump right into it.

Seth:                                  02:27                    My mom had this rare neurological and genetic disease not as Huntington's disease is also known as HD. Similar to having ALS, Alzheimer's, and Parkinson's all into one disease, slowly deteriorating a person's physical and cognitive abilities and unfortunately currently there's no cure. I found out my mom had this when I was 15 years old when she was officially diagnosed. However, prior to that she was like most people misdiagnosed for about seven years, was a long time to for someone to be told that they have depression or bipolar disorder and then find out it's even worse than that, which is a disease without a cure. Growing up it was very difficult, especially as a young person, which is kind of where we'll talk about later. The work I'm doing today focusing on providing resources and support for young people impacted by rare chronic condition, more importantly in the Huntington's disease space. And then we can talk later about my professional career trying to connect patients and caregivers. Don't one another anonymously in the health space.

Janet:                                03:37                    Well this is something that is also a hereditary disease?

Seth:                                  03:43                    Yes. You mentioned hereditary and when I first learned about it, and I'm going to take everyone back to biology class where you do those Punnett squares. Do you remember that at all, Janet? Like the Punnett squares, we have the match like the upper case and lower case like the dominant and recessive.

Janet:                                03:59                    Are we going to talk about peas in a minute?

Seth:                                  04:02                    Yeah, we might. I mean my thought was with a disease they say, well if your Dad's dominant recessive. And so when I did it, it was like, , I'm in the clear I'm all set, but that's not how a lot of these rare diseases work, especially Huntington's where I'm at a 50/50 chance of inheriting it. It's a simple flip of a coin and it's tough to really look at that and say, well where's my future going to end up? Am I going to end up just like my mom or am I going to end up props testing negative and having survivor's guilt, and that's when I ultimately decided at the age of 20 to test for Huntington's disease where I found out I tested positive. I'm a 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 challen