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Nutrtion Equity Episode 9: Classical Homocystinuria (HCU) Newborn Screening Awareness Month
Manage episode 376556638 series 3485028
Listen in as I talk with Valerie a mother of 18 year old Summer who was diagnosed late with Classical Homocystinuria. A rare genetic condition that can be fatal if not caught early. As a result of her late diagnosis Valerie's child Summer had strokes in utero which caused learning disabilities. You can learn more about Homocystinuria (HCU) at hcunetworkamerica.org. You can learn about the Medical Nutrition Equity act (MNEA) at nutritonequity.org. and you can learn about newborn screening and what conditions it covers in your state at https://newbornscreening.hrsa.gov/your-state If you visit the MNEA website please fill out the form and right your local house and senate especially if you have a republican in your state that might reintroduce the bill. Newborn screening has been up for reauthorization for the past few years and it hasn't passed in all states. As long as Newborn Screening doesn't have funding new tests can't be added putting young lives at risk.
Chapters
1. Nutrtion Equity Episode 9: Classical Homocystinuria (HCU) Newborn Screening Awareness Month (00:00:00)
2. diagnosis journey with Homocystinuria (00:05:30)
3. google search brings up wikipedia (00:13:38)
4. challenges and difficulties in the beginig (00:15:44)
5. managing diet and and medications and sources of support (00:21:16)
6. social and emotional development and overcoming challenges (00:26:37)
7. advocating for child's needs (00:33:19)
8. support for Medical Nutrition Equity Act (00:39:28)
9. hopes for the future and milestones and achievements (00:43:08)
52 episodes
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