Living with PKU as an adult - The National Society for …
NSPKU is the only UK charity dedicated to improving the lives of people living with the rare condition PKU. Our goal is to support individuals and families living with Phenylketonuria across the UK.
Living with Phenylketonuria: Lessons from the PKU community
We report the practical, social and psychological issues of living with phenylketonuria (PKU) from one of the largest surveys that has been completed by both adults with PKU and parents/caregivers of children.
Living With PKU | PKU - Phenylketonuria - BioMarin PKU DSE …
With PKU, experts recommend using every available option to manage PKU. No matter how long you’ve been away from a clinic, many symptoms caused by high or unstable blood phenylalanine (Phe) levels can be improved.
What’s it like living with PKU? One advocate speaks out
2024年6月26日 · Kevin Alexander’s life changed forever when he was just nine days old. That’s when his family received news that one of his newborn screening tests came back positive for Phenylketonuria (PKU), a rare inherited disorder that causes the buildup of …
Living with PKU: Jonathan’s Story | BioMarin - BioMarin Corporate
2024年6月28日 · Jonathan and his physicians have kept up with the latest developments in care and came up with a plan to address his PKU that has helped enable him to thrive as he has entered his 50s. We recently met with Jonathan to learn more about his experience living with PKU and ask him about his hopes for the future.
No bread, no dairy, no meat: Living with PKU means eating lots …
2017年9月11日 · A routine blood test showed that Ezekiel had a rare inherited disorder called phenylketonuria, or PKU, which affects one in 15,000 newborns. The pediatric geneticist and medical specialists he needed were a short drive away, in Syracuse.
Living with PKU: A low protein life with Phenylketonuria
2022年6月17日 · Living with PKU: A low protein life with Phenylketonuria is a new and valuable resource for adults and teens with Phenylketonuria (PKU), or for families new to the disorder. Pauline has lived with PKU for over forty years. In this honest account, she shares her experience and mistakes to help others navigating the difficult dietary treatment.
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Phenylketonuria (PKU): Symptoms, Causes & Treatment - Cleveland Clinic
2022年8月15日 · Phenylketonuria (PKU) is a lifelong condition and most people living with it lead healthy lives. After diagnosis, regular blood tests to monitor the level of phenylalanine in your blood are necessary.
Throughout Life - The National Society for Phenylketonuria …
NSPKU is the only UK charity dedicated to improving the lives of people living with the rare condition PKU. Our goal is to support individuals and families living with Phenylketonuria across the UK.
Home - The National Society for Phenylketonuria (NSPKU)
The National Society for Phenylketonuria (NSPKU) was founded in 1973 as the national charity for people living with the rare metabolic condition phenylketonuria (PKU). Learn more about what we do and how you can support our work.