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Kelly the National Homocystinuria representative
Manage episode 366341086 series 3485028
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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.
Chapters
1. Kelly the National Homocystinuria representative (00:00:00)
2. Symptoms of homocystinuria (00:01:01)
3. Homocystinuria defined (00:01:18)
4. Medical foods (00:05:22)
5. How Kelly became the National HCU Rep (00:09:52)
6. Newborn screening in Michigan (00:16:44)
7. reKelly's work as the National HCU Rep (00:17:00)
8. Financial burden of HCU (00:18:27)
9. Getting through to representatives who aren't in Kelly's state (00:20:19)
10. Baby formula recall and how it relates to medical formula (00:20:48)
11. cystadane oral powder medication) enzyme replacement (00:25:49)
12. the issues with medical foods (00:28:00)
13. Kelly isn't paid to be the National JCU Rep (00:29:05)
14. Why people should be tested for HCU (00:29:43)
15. How to help the Medical Nutrition Equity act become law (00:29:46)
16. You can help by talking to your representatives, (00:30:59)
17. Teen medical issues (00:32:45)
18. peer pressure (00:33:45)
19. Depression (00:34:29)
20. Issues with doctors (00:35:55)
52 episodes
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