Rare Connection Episode 4: Pyruvate Dehydogenase Defiecency (PDCD)

Send us Fan MailIn this episode I talk with Layna (parent and advocate with Hope for PDCD https://www.hopeforpdcd.org/) .  PDCD is a inherited metabolic condition that has to do with Carbohydrate metabolism.  They follow the Keto diet.  Layna is responsible for fundraising, education, social media, education, and advocacy.  She has a youtube channel of her own https://www.youtube.com/@laynaoconnor5382 You can donate to Hope for PDCD with the link above.  In addition to being a leader with Hope for PDCD, she is also a parent of a child (Piper) who has PDCD.  Listen as we talk to Latna about her piper's story and how she was diagnosed,as well as her role with Hope for PDCD and other tools that may be helpful if you are a parent of someone with PDCD or have it yourself.  Most die before they reach adulthood or are severly disabled unfortunately.  This like all other episodes are originally filmed on YouTube Live and transfered to buzzsprout who then transfers them to other podcasting stations.  This can take up to 24 hours.  They are also posted to Linkedin, Facebook, X, and later turned into shorts for TikTok, and YouTube.  Chapter Markers00:00 Intro03:35 Inspiration for Layna Joining Hope For PDCD06:10 How piper was diagnosed06:58 How PDCD Differs From Diabetes08:27 overcoming challenges of PDCD11:04 Projects & iniatives15:37 Symptoms and how they affect daily life16:47 Medical Formula21:37 Enhancing Education & research25:21 Advancements in Research28:07 Advice For other Parents32:24 ConclusionSupport the show