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Nutrtion Equity Episode 9: Classical Homocystinuria (HCU) Newborn Screening Awareness Month

September 09, 2023 Joanna
Nutrtion Equity Episode 9: Classical Homocystinuria (HCU) Newborn Screening Awareness Month
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Rare Connection
Nutrtion Equity Episode 9: Classical Homocystinuria (HCU) Newborn Screening Awareness Month
Sep 09, 2023
Joanna

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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.

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Send us a Text Message.

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.

Support the Show.

diagnosis journey with Homocystinuria
google search brings up wikipedia
challenges and difficulties in the beginig
managing diet and and medications and sources of support
social and emotional development and overcoming challenges
advocating for child's needs
support for Medical Nutrition Equity Act
hopes for the future and milestones and achievements