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Chad and Alicia Bohley | Beyond the Diagnosis: A Family's Fight Against MPS 1
Manage episode 428136962 series 3553958
Innehåll tillhandahållet av Mick Hunt. Allt poddinnehåll inklusive avsnitt, grafik och podcastbeskrivningar laddas upp och tillhandahålls direkt av Mick Hunt eller deras podcastplattformspartner. Om du tror att någon använder ditt upphovsrättsskyddade verk utan din tillåtelse kan du följa processen som beskrivs här https://sv.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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