Joanna

Rare Connection

Education EN ↓ 80 episodes

Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions a...

Author

Joanna

Episodes

Nutrition Equity Episode 5: Eosiniphilia 02.08.2023 26:25

Send us Fan Mail Listen in as we talk with patient and biologist Aneta about Eosinophilia. Thanks to Aneta for doing this episode last minute because of a cancelation with the original person I was going to interview. Chapter Markers 00:00 Intro 01:16 What is Eosinephilia? How has it Affected Annetta? 03:11 diagnosis 05:04 Medical foods, or formula? 05:17 Is Eosinephilia treatable with Stem Cel...

Nutrition Equity Episode 4 : Cystic Fibrosis (CF) 12.07.2023 1:03:42

Send us Fan Mail In this episode we talk with Jessica a Cystic Fibrosis patient about her journey with CF, listen in as she discuses here experiences growing up with CF and discusses some of the common misconceptions of CF. She will also discuss her diet and a medical formula and medications that she puts through her g-tube. If you are reading this please consider becoming a subscriber. You gi...

Susan MSUD chair for PKU and Allied Disorders talks about MSUD 03.07.2023 24:42

Send us Fan Mail This video is the third episode of Nutrition Equity a podcast devoloped to promote the Medical Nutriiton Equity Act . In this episode we talk with Susan Neeleman of the MSUD Community. Susan is the Vice President of the New England Connection for PKU and Allied Disorders (NECPAD), the editor cf tShe is a powerful leader in the MSUD as well as the Metabolic Community as s whole. ...

Nutrition Equity Episode 2 PKU with Jill 29.06.2023 1:08:36

Send us Fan Mail Chapter Markers 0:00:00 Intro 0:00:37 What is PKU? 0"01:48 Birth Screening 0:02:55 PKU is Not Contagious 0:03:37 PKU Testing at Home 0:05:57 How Having a Rare Condition Affects Jill 0:10:18 Are Medical Foods & Formula Covered in Utah? 0:10::56 Vitamins Considered Medical Food by the FDA 0:15:37 Pregnancy & PKU 0:17:27 Eating Out on a PKU Diet 0:18:13 Protein Tolerance...

Kelly the National Homocystinuria representative 17.06.2023 42:26

Send us Fan Mail In this episode we talk ro Kelly Waters the national Homocystinuria (HCU) Represntative about Homocystinuria and her advocacy work. We also discus her symptoms, diagnosis, and how you can help advance treatment. I am working on a visual version of this podcast also which I hope to have up in a couple weeks. It had to be retaped. Chapter Markers 00:00 Intro 00:24 introducing Kel...