EPISODE · Aug 5, 2023 · 31 MIN
Nutrition Equity Episode 6: Tyrosinemia (TYR)
from Rare Connection · host Joanna
Send us Fan MailIn this episode of Nutrition Equity I talk with Andrew. A Tyrosinemia patient. Listen along as we learn about Andrew's battles with Tyrosinemia and what it is like to live with this rare condition. Learn about the issues he and others have faced with getting medical foods and formula. What it is like now vs When he was a child. Chapter Markers00:00 Intro05:13 Diagnosis Story07:17 How life has changed since Andrew is on Medication09:06 Medical Formula & diet09:59 Difference between PKU & Tyrosinemia11:01 Cognitive issues11:44 First Meeting with other Tyrosinemia patients13:09 Tyrosinemia on a Daily basis16:58 Challenges faced with accessing treatment19:38 How The Medical Nutrition Equity Act would possitively impact Tyrosinemia patients20:34 Texas coverage for Medical foods, & Formula21:17 How greater awareness can help in advancing policies21:55 Personal stories23:30 Importance of medical foods for patients with rare conditions26:20 Normal blood level27:23 CnclusionSupport the show
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Send us Fan Mail In this episode of Nutrition Equity I talk with Andrew. A Tyrosinemia patient. Listen along as we learn about Andrew's battles with Tyrosinemia and what it is like to live with this rare condition. Learn about the issues he and others have faced with getting medical foods and formula. What it is like now vs When he was a child. Chapter Markers 00:00 Intro 05:13 Diagnosis Story 07:17 How life has changed since Andrew is on Medication 09:06 Medic...
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Nutrition Equity Episode 6: Tyrosinemia (TYR)
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