http://www.raredr.com/news/patient-facing-in-hd
Being Patient-Facing in the Huntington's Disease Space

Louise Vetter and George Yohrling, PhD



The Huntington’s Disease Society of America (HDSA) is the most renowned nonprofit organization dedicated to humanizing the lives of Huntington’s disease (HD) patients, and relating to those who are in constant contact with a patient or patients.

In this video, Louise Vetter, the President and CEO of the HDSA and George Yohrling, PhD, the organization’s Senior Director, Mission and Scientific Affairs discuss why they prefer not to sit behind a desk, and why they love their involvement with patients, families and care givers, and embrace the patient-facing services that the Association offers.

Vetter: One of the greatest challenges working with the HD community is the ever-present “clock on the wall,” and the awareness of time ticking down. My very first day at HDSA, I got a call from a grandfather, who started off the conversation by saying “Louise, I know you’re new to HDSA, but I need to give you a timeframe. I need you to tell me when there’s going to be a cure for this thing, because I’m losing grandchildren at this point.” It’s heartbreaking. It’s so hard to communicate the tangible help that we have today; the doctors, the social workers, the support groups, the communities of families that can make living with Huntington’s disease easier. At the same time, we’re still in unchartered territory when it comes to having disease-modifying treatments. I am very optimistic; there is great science happening. There are breakthroughs literally every year that are bringing us closer and closer to a time when HD will not be the burden that it is, but right now, as I meet with families, and talk to them on the phone, I’m talking about hope that isn’t immediate enough. That transition of time, generation-upon-generation is exhausting, and I feel that.

Yohrling: Hopefully, we hope that no one, obviously, opens that letter that says they’re gene-positive for Huntington’s disease, but we do want them to know that when – or if – that does happen that there’s a family at HDSA that’s there and willing to support them. We provide care through our centers of excellence. There are 41 centers of excellence here in the country that can provide those family members and patients expert multidisciplinary care, so they can turn to us for that. We also have a network of support groups and social workers locally that we support at HDSA, and these are really the workhorses and the “boots on the ground” for the local communities. These are the folks that will, hopefully, help them along the way with a lot of the things that they’re going to need for their HD care, whether it’s dealing with social security and disability, or just finding a long-term care facility locally for their loved one. We have those resources at HDSA, as well.

Vetter: All of our local HDSAs are run by family members, and so the leadership of HDSA is on the front lines, every day, struggling with this disease. That means that as professionals supporting them, my team has to be very well-versed at recognizing the role that a volunteer leader has in their family unit and in their community. For some of them, their active caregivers; a woman caring for her husband who is the president of an HDSA chapter and how she is managing her time. Then, we have other folks who are at risk for the disease, and as they stay involved, become symptomatic. So, all HDSA staff are actually trained by social workers on how to engage with symptomatic individuals. For example, if you have a teleconference with somebody from across the country – so they can’t respond to verbal cues or physical cues – and you are talking about one topic, but then because you have them on the phone, you branch off in another direction, you could lose that individual. As executive function declines, it becomes very hard for them to switch gears and talk about something different. We have to be very sensitive to that. We make sure that we engage our social workers so that we can really support a family who we have a sense is struggling with something and be able to create a local triage of support to help out that family. We’re all caregivers, supporters, ambassadors, teachers, and advocates for our community. I’m really proud that, as an organization, that we’re so committed to that relationship with the people we serve.

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For more information about Huntington’s disease and the work of the Huntington’s Disease Society of America, please visit HDSA.org.
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