Having access to low protein nutrition and food is essential to my overall health but primarily my brain and cognitive function. Particularly, heading toward age range 50+. As a first generation PKU patient, I have sustained brain damage as a result of lack of information when it was discovered in 1966. I was diagnosed at 6 months rather than at birth, then my parents were told that after growth and brain development was told that I would be able to eat a typical diet. The medically modified food needed to live is outrageously unaffordable and the amino acids replacement that PKU patients get there protein from is essential to a meaning life. PKU never goes away and worsens with age and effects relationships, holding employment, causes seizures, depression, anxiety severe brain fog and other cognitive behavioral functions. Insurance is medical partnership. It will cover generic kuvan, phenylade gmp vanilla, but won’t cover most formulas to my knowledge.
- Ishaq, Age 5
- Riverlyn, Age 14 months