There's got to be a better way

By Maria Syed and Donna Baranski-Walker

There’s only one specialist in clinical genetics and inherited metabolic disorders in all of Palestine and her name is Dr. Nadirah D. An assistant professor of medicine at Al Quds University, Dr. Nadirah has a busy practice serving East Jerusalem, Ramallah, and Bethehem. Dr. Nadirah became an advisor to this project soon after her return from a medical fellowship at the University of Toronto where developed her specialty in inborn errors of birth.

This past July, for our regular check-in meeting with Dr. Nadira, Rebuilding Alliance's tiger team learned that Dr. Nadira was seeing a wide number of PKU children all with the same problem:

  • Children who were receiving adequate medical food were showing very high blood phenylalanine or phe measures with numbers over 15 mg/dl when they should have measured under 6 mg/dl

  • The parents, nutritionists, and even the pediatricians mistakenly thought that the medical food was a curative medicine that would allow their PKU children to eat normally — but nothing could be further from the truth

  • They did not understand that a strict low protein diet is absolutely necessary and that medical food is the supplement that makes it possible to live and grow on a diet with nearly no protein.

  • Children with any PHE over 6 are experiencing irreversible brain damage

    Normal blood phenylalanine, or phe measures less than 2.0 mg/dl

Acting on Dr. Nadira’s advice, we’re restructuring the project to offer PKU children and adults the right treatment that helps keep them healthy and avoid health complications. This would involve:

  • Providing transportation to the medical laboratory to run blood tests and obtain information on their health 

  • Providing a weekly basket of Prescription Food put together under the expert advice of Dr. Nadira that keeps the PHE level under permissible levels while offering the nutrition PKU children need for growth and brain development

  • Running a weekly cooking show that features Chef Sanabel, a PKU parent, to teach healthy and PKU-safe recipes to PKU parents

This new approach aims to enhance the overall health and well-being of PKU children and adults by:

  • keeping PHE levels under check through regular blood tests

  • teaching dietary management skills to parents

  • increasing knowledge about PKU disease 

  • reducing PKU-related complications and health issues, and

  • improving quality of life for PKU patients and their families.

Thank you for caring for PKU children and parents. Your continued support is needed to provide healthy food and increase awareness about this disease. 

Maria Syed