Happy Friday, Patient Worthians!
This week, we have a video from a PKU patient telling a first-hand account of the deterioration and serious consequences he faced after he went astray from the PKU diet. We also have an article about a letter a different PKU patient received from their insurance, denying the medical foods that could prevent other patient’s from experiencing the same problems.
We also have exciting research on an osteogenesis imperfecta mutation, and patient contributor’s compelling Acromegaly journey.
So sit back and enjoy this week’s Editor’s Choice.
Watch The Raw Truth: The Untold PKU Story of Andy Trapp- Part 1
Listen to Andy Trapp share his struggles with PKU, and the serious toll eating a non PKU-friendly diet took on him.
Check it out here.
Does BlueCross BlueShield think PKU Patients can Outgrow Their DNA?
We already know that a medical diet for PKU is essential– so why is this insurance company denying their adult patients of the food they need?
Read more about it here.
New Clues About Mutations Possibly Related to Osteogenesis Imperfecta
When scientist altered two genes in mice, it led to insight into a rare bone disease.
Read about the study here.
Amy’s Acromegaly Story: Part 1
Amy, a business analyst and mom, shares her winding journey to a rare diagnosis.
Read her tell her story here.
