National MPS Society: Our Voices

Under the Hurdles with Sheri Wise


Listen Later

In this episode:

  • Sheri Wise is a current member of the Society's board of directors.
  • We discuss how great it is that there are more and more diagnoses in newborns and infants, but for us, it was later diagnosis and longer diagnostic journeys.
  • "There wasn't much information about MPS before the internet, which was probably a good thing." ~ Sheri Wise
  • Sheri was told she would live to 6 or maybe ten years old.
  • Sheri grew up on a farm in rural Oklahoma, and Sheri remembers always wanting to go and do what others were doing, riding horses, going to the lake, etc.
  • We talk about the life-changing event when we both were offered our first infusions.
  • We discuss the frustration of boarding a new doctor when you have a rare disease, the learning curve required for them, and how you must advocate for yourself with doctors.
  • From driving to dating, we discuss some challenges unique to being an adult with a disease largely treated by pediatricians. 
  • "You just have to prepare for the things you know are coming. Be the best you can. And take one day at a time. And there's nothing wrong with that." ~ Sheri
  • We talk about our hopes for newborn screening and how it will affect those diagnosed in the future.



The  National MPS Society exists to cure, support, and advocate for MPS and ML.

If you like Our Voices, visit our website and follow us on social media on Facebook, Instagram, Twitter, and LinkedIn. And if you like the podcast, we'd appreciate you telling a friend (maybe even two). 

     

...more
View all episodesView all episodes
Download on the App Store

National MPS Society: Our VoicesBy National MPS Society

  • 5
  • 5
  • 5
  • 5
  • 5

5

19 ratings


More shows like National MPS Society: Our Voices

View all
Guys Who Do Stuff by Relevant Media Solutions

Guys Who Do Stuff

26 Listeners

Get a Job, Here's How by Back to Business Conference

Get a Job, Here's How

40 Listeners

Girls Who Do Stuff by Jenny Midgley and Sarah Madras

Girls Who Do Stuff

29 Listeners

Ex-it Strategy by New Direction Family Law Firm

Ex-it Strategy

23 Listeners

TechOver Africa by Podcast

TechOver Africa

0 Listeners

Back to Basics by Tim B.

Back to Basics

0 Listeners

NCREIA Podcast by Eric and Barry

NCREIA Podcast

0 Listeners

The Big Book Study by Tim B.

The Big Book Study

5 Listeners

Talk of the Triangle by Midtown, 5 West + Triangle Family magazines

Talk of the Triangle

4 Listeners

Let's Start Here: LifeCare Counseling and Coaching by LifeCare Counseling & Coaching

Let's Start Here: LifeCare Counseling and Coaching

7 Listeners

No Sleep Sherlock by Joe Woolworth and Josh Manning

No Sleep Sherlock

0 Listeners

Healthcare Nation by Rick Gannotta

Healthcare Nation

7 Listeners

SermonCraft by Chase Gardner

SermonCraft

4 Listeners

The Sh$t Show with Joe Bosco by Joe Bosco

The Sh$t Show with Joe Bosco

0 Listeners

The Hummingbird Effect with Wendy Coulter by Hummingbird Creative Group

The Hummingbird Effect with Wendy Coulter

0 Listeners

Hot Takes: 50Cups by 50Cups

Hot Takes: 50Cups

0 Listeners

Fashion Files by Karis Reneé

Fashion Files

7 Listeners

Mental Health in the Workplace by Triangle Business Journal

Mental Health in the Workplace

0 Listeners

Ramblings of a Restless Mind by Jen Bordeaux and DeJah Debon

Ramblings of a Restless Mind

0 Listeners