Seth Rotberg, who holds a master’s in nonprofit management, is based in Chicago, Illinois, and tested positive for Huntington’s disease in 2011. He shares how he copes with an uncertain future and leans on community.
Transcript
One of the biggest challenges is seeing your parents slowly deteriorate both physically and mentally in front of your eyes and realizing that — “That could be me one day.” It’s very difficult at times for me to live in the present moment when I know I’m guaranteed to get HD unless there’s an effective treatment that becomes available in time.
Since testing positive, I’m considered pre-symptomatic, but part of me feels like I’m racing against this invisible clock, which makes it very challenging. And so I know I’m going to get the disease unless there’s a way that stops it from happening.
But I’ll say that I am doing my best to enjoy life more by surrounding myself with positive people, positive energy, traveling, spending time with loved ones, doing activities that make me happy.
One thing that’s helped me out tremendously as I cope with one day getting HD is my support system. That includes friends, family, therapy, and the HD community.
I think the last part of the HD community really helps because knowing I’m not alone allows me to keep fighting until there’s an effective treatment for me and many members of the HD community who I consider friends or I consider some of them even family.
And in addition to my support system, I know there’s a lot of great resources out there from patient advocacy groups that provide education support to the HD community. Some of these resources include topics on genetic testing, talking to friends and family, romantic partners, financial planning, among other things.
