Rare Connection

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...

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...

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. ...

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...

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...