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Kelly the National Homocystinuria representative

EPISODE · Jun 17, 2023 · 42 MIN

Kelly the National Homocystinuria representative

from Rare Connection · host Joanna

Send us Fan MailIn 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 Markers00:00 Intro00:24 introducing Kelly00:52 What is Homocystinuria AKA HCU?01:22 Diagnosis & symptoms04:00 Medical Foods04:34 Kelly/s mother tells her she has HCU07:15 How Kelly became the National HCU Representative09:27 Eye Surgery12:31 Kelly Meets Danae Bartke the Executive Director of HCU Network America14:00 Newborn Screening in Michigan15:54 Coverage varies from State to state17:39 Getting through to Reps that aren't in the same state'18:19 Baby Formula Recall Affected Medical Formula also23:25 Cystadane AKA Betaine25:37 Medical cheeseyou can have a medical condition without symptoms27:47 Kelly is not paid for her work28:14 How you can help28:25 You can have a medical condition & not have all the symptoms31:13 HCU life expectancy story36:05 Travel for care37:03 Messed up labs39:06 Clinical trial for HCU46:28 Extreme myopia47:13 ConclusionSupport the show

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Kelly the National Homocystinuria representative

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