Ep 69 Huntington’s disease: Let’s talk frankly

This Podcast Will Kill You

Exactly Right and iHeartPodcasts

Health & Fitness, Science

4.8 • 17.7K Ratings

🗓️ 23 March 2021

⏱️ 87 minutes

🔗️ Recording | iTunes | RSS

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Summary

Despite being one of the earliest recognized genetic diseases, many aspects of Huntington’s disease remain shrouded in mystery. This stems in part from our limited grasp on how our own minds work but also from the dark history of Huntington’s disease and the shame and silence that accompanied it for so long. In this episode, we attempt to bring what we know about Huntington’s disease into the light, to talk frankly about the characteristics and progression of this hereditary disease, the role of eugenics in creating and promoting the stigma surrounding it, the ethical considerations surrounding genetic testing, and the medical and scientific advancements that give us reason to hope. And we are so grateful to the provider of our firsthand account for sharing their perspective on what it’s like to be diagnosed with this disease. Tune in for all this and more.

Transcript

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0:00.0	We at Wundry live, breathe, and downright obsess over True Crime.
0:04.0	And now we're launching the ultimate True Crime fan experience, Exhibit C.
0:09.2	Join now by following Wundry Exhibit C on Facebook and listen to True Crime on Wundry and Amazon
0:15.3	Music. Exhibit C. It's truly criminal. My name is Jay and I am 34 years old and I was recently
0:27.0	diagnosed with Huntington's disease. My grandfather was diagnosed with Huntington's in his 80s,
0:36.2	but I don't think he and my grandmother really understood this, you know, severity of the illness
0:42.8	and its implications for their children and grandchildren. So they never really told us
0:49.3	until my father started seeing some symptoms in his 50s. So that's when I found out, I guess I was 28,
1:02.0	I had just been married, you know, there's so much optimism and then I found out for my parents
1:11.7	that there's this terrible shadow, you know, that's going to be potentially hanging over my life.
1:21.3	And it was definitely really, really hard. I'm not going to lie. Your priorities sort of shift,
1:30.7	just trying to maximize the years that you might have with a good quality of life, you know.
1:36.0	So I didn't get tested right away. I really wasn't ready, but over the years, I started to, I guess,
1:49.5	come to a point of acceptance. And I also started to see symptoms starting to appear. Things like
1:59.1	coronation issues, balance issues, also difficulties wallowing and drinking. So that's how it's starting
2:10.4	to affect me and it got to a point where it was ready to be tested. And so I did that, I guess a few
2:17.6	months ago actually. And now I have the official results that I am positive for a hemorrhagged
2:26.3	disease. At that point, I guess it wasn't as bad as I thought actually to get those words.
2:34.5	Three, it was, I guess, a little bit freeing to finally have some solid
2:43.6	answers and to know what my reality would be, you know, I'm really lucky to have a really
2:51.8	supportive husband with me. He's been a rock for every step of the way. Being understanding for all
3:00.3	my decisions, one in particular is that I feel really strongly that I don't want to pass this on
	...

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