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 Medical Formula & diet
09:59 Difference between PKU & Tyrosinemia
11:01 Cognitive issues
11:44 First Meeting with other Tyrosinemia patients
13:09 Tyrosinemia on a Daily basis
16:58 Challenges faced with accessing treatment
19:38 How The Medical Nutrition Equity Act would possitively impact Tyrosinemia patients
20:34 Texas coverage for Medical foods, & Formula
21:17 How greater awareness can help in advancing policies
21:55 Personal stories
23:30 Importance of medical foods for patients with rare conditions
26:20 Normal blood level
27:23 Cnclusion
