Seth Rotberg holds a master’s in nonprofit management and is based in Chicago, Illinois. He tested positive for Huntington’s disease in 2011. He reveals how accepting support can make all the difference.

When you meet one person with HD, you truly meet one person with HD, since everyone’s HD journey may be different. And so, what I would say is that, unfortunately, there’s no one-size-fits-all approach, but I would always suggest to never be afraid to ask for help from friends, family, or the HD community.

There’s a lot of people who perhaps struggle to ask for help because they don’t want to be turned down or they are trying to do everything on their own, and that can lead to caregiver burnout, which we see a lot of. And so, I always say it never hurts to ask for help and to kind of show that vulnerable side, to say, “Hey, I need support.”

I think it’s important for others to understand, you know, what you’re going through. And when it comes to maybe even asking the HD community for support, right, they may understand what you’re going through because they’ve gone through it before. And they may share what has worked, they may share what hasn’t worked, so that way you don’t have to reinvent the wheel.

And then I also say check out the different patient advocacy organizations’ websites for resources or reach out to them for additional support. Many of them have support groups, they have social workers, they have HD specialists, among other valuable resources that can help you as you prepare for the progression of Huntington’s disease one day.