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Chad and Alicia Bohley | Beyond the Diagnosis: A Family's Fight Against MPS 1
Manage episode 428136962 series 3553958
Το περιεχόμενο παρέχεται από το Mick Hunt. Όλο το περιεχόμενο podcast, συμπεριλαμβανομένων των επεισοδίων, των γραφικών και των περιγραφών podcast, μεταφορτώνεται και παρέχεται απευθείας από τον Mick Hunt ή τον συνεργάτη της πλατφόρμας podcast. Εάν πιστεύετε ότι κάποιος χρησιμοποιεί το έργο σας που προστατεύεται από πνευματικά δικαιώματα χωρίς την άδειά σας, μπορείτε να ακολουθήσετε τη διαδικασία που περιγράφεται εδώ https://el.player.fm/legal.
In this heartfelt episode, Mick Hunt talks with Chad and Alicia about their family's battle with MPS 1 following their son's late diagnosis. They discuss the complexities of the disease, the critical role of early detection, and their dedicated efforts to raise awareness and support other affected families. Their story is not just one of challenges but also immense love, resilience, and hope.
Background: Chad and Alicia share their journey dealing with their son’s diagnosis of MPS 1, a rare genetic condition.
Discussion Topics:
- The challenges of recognizing and diagnosing MPS 1 include initial symptoms and the genetic aspects of the disease.
- The emotional and practical impacts of MPS 1 on their family life, detailing their son's various treatments and their advocacy efforts.
- The importance of genetic testing and early diagnosis, and the couple's involvement in legislative changes to support this cause.
Key Quotes:
- "No parents should have to wait three years to get this diagnosis."
- "Every single symptom he has was like checking off a box."
Next Steps:
- Learn More: Dive deeper into MPS 1 and how you can support families and research.
- Reflect: Consider how you can contribute to advocacy in your community for rare diseases.
- Engage: Share your thoughts or stories about overcoming health challenges using #MickUnplugged.
Connect & Discover:
National MPS Society: mpssociety.org>courage>jacob-bohley
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