PKU Health Education Project

PKU Health Education Project

Phenylketonuria (PKU) is a condition in which children lack the gene necessary to create the enzyme needed to break down an amino acid called phenylalanine. The buildup of phenylalanine to dangerous levels leads to severe physical and mental health problems such as brain damage. PKU can be corrected simply by monitoring and administration of a specific diet. 

The current situation in Morocco regarding diagnosis and treatment of children with PKU is dire. Both knowledge and resources are lacking. Children are not automatically screened at birth for PKU. Most doctors are not trained to recognize symptoms, diagnose and properly treat PKU. Children will needlessly suffer from the condition until they are diagnosed. However, even upon diagnosis, the milk formula necessary to balance the blood level of the enzyme can only be accessed by military families at one military hospital. This formula needs to be taken daily and yet is inaccessible to most Moroccans. In addition, the weekly blood tests required for proper monitoring are only available at a limited number of laboratories in only a few cities. 

The objective of HMEMSA PKU committee is to improve the lives of individuals and families in Morocco suffering with PKU.

GOALS

  • Provide evidence-based practices on case management to Moroccan doctors and hospitals through seminars and webinars by American healthcare professionals and experts of PKU.
  • Provide educational and financial resources to doctors and needy families to manage PKU.
  • Increase access of the formula, Amino Acids Phenylalanine free, by advocating for coverage by healthcare insurance.
  • Advocate for implementation of early screening for every child at birth as it is done in US
  • Manage the support group of PKU families in Morocco.

ACCOMPLISHMENTS

  • Collaborating with “Association Marocaine des Patients PKU”, a non-profit organization of PKU families in Morocco.
  • Managing the care of 70 cases from all over Morocco in coordination with their PCP in Morocco and Children’s National Hospital, Washington DC .
  • Provided $50k worth of donated formula and food.
  • Many improved lives. 
  • Planning an Educational Medical Mission from June 30th to July 5th, 2020

PKU Resources:

https://www.mayoclinic.org/diseases-conditions/phenylketonuria/diagnosis-treatment/drc-20376308

https://www.pkuday.org/about/https://studylibfr.com/doc/10030189/journée-mondiale-de-la-phénylcétonurie—appel-au-dépista.

 What is PKU?

Arabic

https://www.mayoclinic.org/diseases-conditions/phenylketonuria/diagnosis-treatment/drc-20376308


French

https://studylibfr.com/doc/10030189/journée-mondiale-de-la-phénylcétonurie—appel-au-dépista…

Project Committee

LEAD: – Fatiha (picture of Fatiha)

US TEAM: Wafa Bennani- Yamina Naciri- Mohamed Belkhayat

MOROCCO TEAM: Pr. Chabraoui, Dr. Othman Touzani, 

Partners/ Supporter

  • La societe Marocaine des maladies métabolique (MSSIEM) 
  • Association Marocaine des Patients PKU
  • Hospital Cheikh Zayid 
  • Embassy of Morocco in DC
  • Operation Smile Morocco
  • Hospital Cheikh Khalifa, Casablanca, Morocco

I am the mother of a child suffering from PKU, a hereditary condition that can cause severe mental and physical disability if not managed closely with a proper diet. Although I am a Moroccan national, I was not able to visit my homeland for a long time after my daughter’s birth because of the absence of formula and a way to monitor my daughter’s blood level of Phenylalanine levels.

Through HMEMSA in the past year, we have finally been able to make a few steps that have made a huge difference in the lives of many children suffering from this condition.  However, our goals are much larger, and we hope that you can join us by sharing your expertise or resources to allow us to improve the quality of services for the many families especially the needy ones.