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In this episode we talk with Jessica a  Cystic Fibrosis patient about her journey with CF, listen in as she discuses here experiences growing up with CF and discusses some of the common misconceptions of CF.  She will also discuss her diet and a medical formula and medications that she puts through her g-tube.  If you are reading this please consider becoming a subscriber.  You give financially at https://www.buzzsprout.com/2204433/support or through the link at veganandlowproteincooking.com through the cash app.  I am zebrastripesHCU on 

Chapter Markers

0:00:00 Intro
0:02:44 What is Cystic Fibrosis? CF
0:04:23 Diagnosis journey
0:09:32 How specialized nutrition has benefited Jessica?
0:25:54 Help Copays Act
0:27:48 coping with the emotional & psychological aspects of CF
0:35:52 Support system
0:39:26 Advice to Other CF patients
0:46:44 How The Medical Nutrition Equity Act would help CF Patients
0:51:25 How CF has influenced Jessica's life & how sge prioritizes
0:53:47 Misconceptions
1:01:31 Conclusion

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This video is the third episode of Nutrition Equity a podcast devoloped to promote the Medical Nutriiton Equity Act .  In this episode we talk with Susan Neeleman of the MSUD Community.  Susan is the Vice President of the New England Connection for PKU and Allied Disorders (NECPAD), the editor cf tShe is a powerful leader in the MSUD as well as the Metabolic Community as s whole.  She MSUD Family Support Group news letter, and she is also the MSUD Chair in Canada.

Chapter Markers

00:00 Intro
02:15 What is Maple Syrup Urine Disease MSUD?
03:28 How MSUD differs from Diabetes
04:15 Diagnosis
06:03 Susan's role at the MSUd family Support Group
06:39 Susan's role at CANPKU+
07:15 Susan's Role at the New England Connection for PKU & Allied Disoorders
07:53 Unique Challenges to MSUD Patients
09:51 Steos that can be taken to improve Nutrition equity
13:53 New Treatments & Therapies
15:39 Ensuring equal access to all
16:23 Inspiring stories of MSUD patients
17:42 Resources & support
19:01 /hopes for the future
19:29 Conclusion

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Chapter Markers

0:00:00 Intro
0:00:37 What is PKU?
0"01:48 Birth Screening
0:02:55 PKU is Not Contagious
0:03:37 PKU Testing at Home
0:05:57 How Having a Rare Condition Affects Jill
0:10:18 Are Medical Foods & Formula Covered in Utah?
0:10::56 Vitamins Considered Medical Food by the FDA
0:15:37 Pregnancy & PKU
0:17:27 Eating Out on a PKU Diet
0:18:13 Protein Tolerance
0:19:42 Calories Need to Be High
0:20:32 Pregnancy, Diet, & PKU
0:22:33 Palynziq & Pregnancy
0:25:10 Nursing with PKU
0:27:26 Healthcare by Location
0:28:40 Cheating on Diet
0:29:10 Sibling with PKU
0:30:36 Being Around High-Protein Foods
0:36:40 Medical Foods and Texture
0:39:50 PKU Blood Level Range
0:40:09 Missing an Injection
0:41:57 Tracking Diet
0:47:53 What 8 Grams of Protein Per Day Looks Like
0:48:24 At Least 60 Grams of Protein Per Day
0:49:42 Sleep & PKU
0:50:42 Going Off Diet as a Child
0:52:26 Going Back on the PKU Diet
0:52:55 Altering Recipes
0:53:58 Diet by Location
0:57:22 Peer Pressure
1:01:07 Why Many Cheat
1:03:01 Turning Point
1:05:44 Medical Gaslighting
1:07:04 High Cost of Medical Foods
1:08:50 Why Doctors Need More Rare Disease Education
1:10:39 Amino Acid PHE Isn’t Just in Food
1:17:33 Contacting Legislators
1:17:52 Conclusion

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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.

Chapter Markers

00:00 Intro
00:24 introducing Kelly
00:52 What is Homocystinuria AKA HCU?
01:22 Diagnosis & symptoms
04:00 Medical Foods
04:34 Kelly/s mother tells her she has HCU
07:15 How Kelly became the National HCU Representative
09:27 Eye Surgery
12:31 Kelly Meets Danae Bartke the Executive Director of HCU Network America
14:00 Newborn Screening in Michigan
15:54 Coverage varies from State to state
17:39 Getting through to Reps that aren't in the same state'
18:19 Baby Formula Recall Affected Medical Formula also
23:25 Cystadane AKA Betaine
25:37 Medical cheeseyou can have a medical condition without symptoms
27:47 Kelly is not paid for her work
28:14 How you can help
28:25 You can have a medical condition & not have all the symptoms
31:13 HCU life expectancy story
36:05 Travel for care
37:03 Messed up labs
39:06 Clinical trial for HCU
46:28 Extreme myopia
47:13 Conclusion

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