George Yohrling, Ph.D., Senior Director of Mission and Science at the HDSA discusses the challenges that come with working with patients with HD, and communicating with their family members and caregivers.
Throughout the rare disease community, raising awareness can be a struggle. This is especially true for those afflicted by Huntington's disease (HD), as there simply aren't enough doctors who understand how devastating it can be.
In this video, George Yohrling, Ph.D., Senior Director of Mission and Science at the Huntington's Disease Society of America (HDSA) discusses the challenges that come with working with patients with HD, and communicating with their family members and caregivers.
Yohrling: One thing that everyone struggles with in HD communities is awareness. It’s a devastating disease. You don’t have to tell the families that struggle with it every day but when I communicate my family or my friends ask what I do and we talk about it, you say well it’s a genetic neurologic disease. The next question out of their mouths is if it doesn’t run in my family, does it mean I can’t get it. And the answer is yes with some exceptions. Families and people tend to shut off, I thank God I don’t have to worry about that. It’s that because it’s a rare disease it’s building awareness and getting the resources to these families that need it. It’s been a struggle to raise the funds for research, for care, in particular. There’s not enough doctors that understand HD, and that’s something we struggle with at HDSA.
Most patients with HD in their families don’t go to an HD expert, a neurologist or psychiatrist who has HD training. These doctors that they see, their community physicians, their PCPs, they may see one HD patient in their lifetime. We struggle with making sure that those physicians are well trained and educated about the disease so that they can provide adequate care to families. At HDSA, we have a great network of centers of excellence around the country. We have 41 of these centers here in America where families can go, we fund them, and we vet them and it’s a place where families and caregivers know they can go to get expert multidisciplinary care for their disease and it’s fantastic that we have 41. We’ve more than doubled the number. We had 20 in 2014 and now we have over 40. But it’s still not enough. There’s still geographical barriers to getting access so we certainly know that we aren’t able to capture all of the Huntington’s Disease patients and families at the centers of excellence. So, we need to do a better job at bringing those centers to families and bringing expertise to the physicians that they see; that’s something we struggle with.
This Rare Disease Day, Rare Disease Report wants to encourage our audience to share helpful and informational content whenever possible in the effort to raise awareness. You can keep up with RDR on Facebook and Twitter, or by subscribing to our e-newsletter.