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Under the Hurdles with Sheri Wise
Manage episode 345233912 series 3320145
Innhold levert av Joe Woolworth and National MPS Society. Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av Joe Woolworth and National MPS Society eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.
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).
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