Rare Connection

Kelly the National Homocystinuria representative

June 17, 2023 Joanna Season 1 Episode 1
Kelly the National Homocystinuria representative
Rare Connection
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Rare Connection
Kelly the National Homocystinuria representative
Jun 17, 2023 Season 1 Episode 1
Joanna

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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.

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Show Notes Chapter Markers

Send us a Text Message.

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.

Support the Show.

Symptoms of homocystinuria
Homocystinuria defined
Medical foods
How Kelly became the National HCU Rep
Newborn screening in Michigan
reKelly's work as the National HCU Rep
Financial burden of HCU
Getting through to representatives who aren't in Kelly's state
Baby formula recall and how it relates to medical formula
cystadane oral powder medication) enzyme replacement
the issues with medical foods
Kelly isn't paid to be the National JCU Rep
Why people should be tested for HCU
How to help the Medical Nutrition Equity act become law
You can help by talking to your representatives,
Teen medical issues
peer pressure
Depression
Issues with doctors