Medical

In 2020, our TRA team learned of a metabolic disorder called Phenylketonuria (PKU) while helping an internally displaced family with local medical visits when their third baby showed the same symptoms as their firstborn who is severely disabled. A local lab ran a newborn screening and made the PKU diagnosis.

 

PKU is an inherited genetic metabolic disorder resulting in the inability to metabolize the amino acid phenylalanine, leading to its accumulation in the brain.  Phenylalanine is an amino acid present in most nutritional proteins (for example: milk, meat, eggs, cheese, etc).  If PKU is not diagnosed shortly after birth and treated properly, the child will have phenylalanine buildup in their brain which leads to long-term mental and/or physical developmental issues.

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If PKU is diagnosed right away and is treated correctly, the child can develop normally and live a healthy life. 

 

Due to long-term instability in Iraq, the medical and educational systems have been severely disrupted. In order to help, we began a PKU task force dedicated to help create bridges of opportunity for the patients, families, medical community and government. Our focus is on education, advocacy, research, and patient care for PKU and more broadly "Inborn Errors of Metabolism." One of our main goals is to encourage newborn screening on all newborn babies to identify genetic issues shortly after birth. 

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Our teams, consisting of a nurse and support staff, visit children with PKU in their homes and tents regularly to draw blood and implement treatment plans under the guidance of metabolic specialists in the US.   Physiotherapists join us from time to time to help the children as well.

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We are pleased to have had and continue to have opportunities to share with the medical community in Iraq the importance of newborn screening and the specialized treatment need for patients with PKU.  In addition, we are currently working with a local university on the possibility of adding a Nutrition Science program to their curriculum. 

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TRA has a Memorandum of Understanding with the Directorate of Health Duhok, as well as with the Ministry of Health of Kurdistan, Iraq, to hire and/or receive volunteer medical professionals to provide specialized healthcare and educational support for patients and family members with metabolic disorders and/or other disabilities in the Kurdistan Region of Iraq. Medical professionals include but are not limited to doctors, nurses, dieticians, physical therapists, physiotherapists and psychologists.

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Our primary long term objective is reducing disability, improving quality of life, and restoring dignity for people with Metabolic Disorders through high quality interdisciplinary care and support provided locally.