Nutrition Equity Episode 2 PKU with Jill Artwork

Rare Connection

Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture. Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime. As someone with a rare condition myself (Homocystinuria or HCU), know that having a rare condition can be very lonely. Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death. If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com. I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.

All Episodes

Rare Connection

Nutrition Equity Episode 2 PKU with Jill

June 29, 2023 • Joanna

Send us a text

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

Support the show