Long Chain Hydrocxy Coenzyme A Dehydrogenase Deficiency (LCHAD)

Send us Fan MailThis week Rare Connection goes back to it's roots with a condition covered by the Medical Nutrition Equity Act if it were to pass.  The MNEA would mandate that health insurance cover medically prescribed food, formula and vitamins for those who need them.  At the beginning of last season in February Nutrition Equity became Rare Conne6892ction to cover more conditions and allow me to go outside the country.  House bill 6892 was reintroduced into congress by representative McGovern. Long Chain Hydroxy Coenzyme A Dehydrogenase Deficiency (LCHAD) is an Inborn Error in Metabolism.  Join me as I talk to Alexandra about how she was diagnosed, her podcast "Positively Walking with Mito<" Advocacy, Advice and hopes for the future as well as the Medical Nutrition Equity Act and how it would help those with LCHAD.  We are currently seeking a Senate Republican to champion the senate side.  If you are in the US you can help us to get this bill passed for countless individuals.  12 episodes of Nutrition Equity were filmed before it became Rare Connection.  We also now have a website.  rareconnection.org If you are interested you can join our email list, read about our board members that currently have bios up, and more.  Some of the episodes and shorts are also on their.  Chapter Markers00:00 Intro03:04 LCHAD explained03:37 Alexandra's symptoms04:57 Medical formula05:45 Diagnosis process08:06 Resilience & adaptation10:00 Inspiration for Positively Walking with Mito11:58 Balancing raising awareness with managing health13:33 Importance of the Medical Nutrition Equity Act15:59 How you can support the MNEA17:40 Daily challenges20:09 Tracking fat & calories21:40 Measuring by scale24:28 Role of medical foods & formula26:10 Spoon theory28:18 Going over on fat29:28 Advice for newly diagnosed31:32 Hopes for the future of rare disease treatment34:00 Newborn Screening Bootcamp34:50 Future advocacy goals35:44 ConclusionSupport the show