Chronic Intestinal Pseudo Obstruction With Briana From Ohio

Send us Fan MailBriana's son was diagnosed with Maple Syrup Urine Disease and Chronic Intestinak Psuedo Obstruction,  He will be undergoing a dual transplant of both the small intestine and the Liver.  Liver transplants have been known to cure Maple Syrup Urine Disease,  Both conditions are covered by the Medical Nutrition Equity Act which would mandate that health insurance cover the cost of medical foods, formula and vitamins nationwide.  The bill was reintroduced into the House in December of last year and we are now looking for a Senate republican to reintroduce the bill into the senate.  Please write your representees and ask them to sponsor HR 6982 championed by representative McGovern and If you have a republican senator ask them if they would be willing to reintroduce this Life saving bill. S3pt3mber is also Newborn Screening Awareness Month and Maple Syrup Urine Disease is on the Newborn screening panel in all 50 states,  Junior was not picked up by newborn screening, but many are missed sadly.  Newborn Screening is up for reauthorization and needs vital funding to be able to ad more conditions to this live saving bill and get the children treated before it is to late.  This is the second episode in a row where I have talked to transplant recipients.  Please consider becoming a donor.  You could be saving someone's life.  Chapter Markers0:00:00 intro0:03:25 early signs0:09:27 Junior has MSUD, but doesn't carry the gene0:11:09 Chronic intestinal pseudo obstruction0:16:50 daily life & the biggest challenges jn Managing Juniors conditions0:22:10 Managing nutrtional needs0:25:41 Navigating the healthcare sysrem0:32:55 How a liver transplant could potenntially change Junior's condition0:38:38 Support needed during & after transplant surgeries0:45:00 Benefits & risks of transplants0:49:09 Importance of MSUD to be on the Newborn Screening panel0:54:53 Medical Nutrtion Equity Act Impact on Briana's families life0:57:08 Getting involved in advocating for the MNEA1:02:54 self care1:06:28 Resources &support Networks1:09:52Advice for new parents1:11:54 ConclusionSupport the show