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This Podcast Will Kill You

Ep 155 Stiff Person Syndrome: A rare disease in the spotlight

This Podcast Will Kill You

Exactly Right and iHeartPodcasts

Health & Fitness, Science

4.817.1K Ratings

🗓️ 22 October 2024

⏱️ 86 minutes

🧾️ Download transcript

Summary

Stiff person syndrome, like many rare diseases, does not get nearly the same amount of screen time or name recognition that other, more common diseases do. For many people, Celine Dion’s announcement of her diagnosis with the condition in 2022 marked the first time they had heard of it. This limited awareness surrounding stiff person syndrome marks just one of the many challenges keeping this disease and other rare disorders in the dark. In this episode, we attempt to shed some light on stiff person syndrome, exploring the complex biology, frustrating history, and hopeful future of this disease. Because while the field of stiff person syndrome research faces many hurdles, there are also so many individuals - researchers, patients, advocates - and organizations that fight to bring this and other rare disorders into the light. Tune in today! Links: National Organization for Rare Diseases Genetic and Rare Diseases Information Center Johns Hopkins Stiff Person Syndrome Center Support this podcast by shopping our latest sponsor deals and promotions at this link: https://bit.ly/3WwtIAu Learn more about your ad choices. Visit megaphone.fm/adchoices

Transcript

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0:00.0

This is exactly right.

0:05.0

Turning an idea into a small business doesn't happen by accident.

0:10.0

You need to be all in.

0:12.0

At constant contact, we have the digital marketing tools you need to get the word out, close the sale, raise the funds, and gather a community around this thing you've built.

0:20.0

So let's do this together. Let's send this, share this and shout this from the rooftops.

0:24.7

Let's segment this, automate this, and AI this for real results fast.

0:29.2

Let's get out of this what we put into this.

0:30.9

Let's build this.

0:31.8

Let's grow this. Let's win this. Get started today at

0:34.8

constant contact.com. Us, behold us. We have something he needs.

0:47.0

This world can't survive if you stay together.

0:51.0

We may not make it out of this alive, buddy.

0:55.0

Venom, The Last Dance.

0:58.0

Don't miss the epic conclusion.

1:01.0

Only in Cinemars October 25th.

1:04.0

But tickets now.

1:07.0

Hi, my name is Allison Laffordy.

1:10.0

I'm currently in Nevada, and I suffer from Stiff Person Syndrome. So I was diagnosed in November 18th, 2021

1:20.5

after almost two years of searching for a diagnosis.

1:25.0

I started out going the orthopedic route

1:29.0

because my symptoms were tightness in my back,

1:32.0

spinal type pain, heaviness in my trunk area and pain that went down

...

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