Sarah Sullivan of UTHSC Receives $5,000 Grant Award from National PKU Alliance
Memphis, Tenn. (May 28, 2013) – Some things you never grow out of. Phenylketonuria (PKU) is on that list. A rare, inherited metabolic disorder, PKU
robs the body of the ability to use the essential amino acid, phenylalanine. Amino acids, usually obtained from the food we eat, are the building
blocks for body proteins. Most often detected during infancy, PKU is caused by a deficiency of the enzyme phenylalanine hydroxylase, which is produced
in the liver. While there is no cure for the disorder, PKU can be controlled by maintaining dietary restrictions.
Sarah Sullivan, MS, RD, LDN, metabolic dietitian and nutritionist for the Boling Center for Developmental Disabilities at the University of Tennessee
Health Science Center (UTHSC), understands the importance of continuing PKU treatments as an adult. Dr. Sullivan was recently awarded $5,000 from the
National PKU Alliance (NPKUA) for her year-long project titled, “Reaching Previously Followed Adults with PKU in the Memphis Region: Returning to
Treatment.”
Foregoing dietary treatment during the essential time of brain development causes permanent brain damage, leading to intellectual disability. As an
adult, lack of dietary treatment can lead to an array of problems including hyperactivity, irritability, sleep disturbances, psychomotor agitation,
erratic or aggressive behavior, poor ability to follow directions or acquire new skills, seizures, tremors, muscle complications, skin problems , or body odor. Outreach to adults living with PKU aims to improve their quality of life and get
them back on treatment.
Dr. Sullivan’s project will be coordinated by the Inborn Error of Metabolism (IEM) Clinic at the Boling Center for Developmental Disabilities, a unit
of the UTHSC College of Medicine. With grant funds from NPKUA, the project’s goals are to: attempt contact with adult PKU patients in the region, plan
an event and have those contacted attend, provide information on resources for PKU, and bring adults back into clinic for dietary management of PKU to
improve quality of life.
After newborn screening was started, there was considerable controversy on the length of time to continue dietary treatment for PKU and many
discontinued diet. There is now a consensus to continue “diet for life” to manage the disorder.
“I am honored that the NPKUA granted us funding to reach adults with PKU who are not currently being treated,” said Dr. Sullivan. “PKU research and
resources have progressed significantly in the past 10 years and this project hopes to reach more adults who might not be aware of treatment updates
and resources. May is national PKU Awareness month, so this is a great time to get the project under way.”
The National PKU Alliance
works to improve the lives of families and individuals associated with PKU through research, support, education and advocacy, while ultimately seeking
a cure. The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country. It is the first national nonprofit organization to
unite adults, families, regional and statewide PKU organizations, the medical community and PKU-friendly businesses to make a difference in the lives
of people with PKU. For more information, visit www.npkua.org.
As Tennessee’s only public, statewide academic health system, the mission of the University of Tennessee Health Science Center (UTHSC)
is to bring the benefits of the health sciences to the achievement and maintenance of human health, with a focus on the citizens of Tennessee and the
region, by pursuing an integrated program of education, research, clinical care, and public service. Offering a broad range of postgraduate and
selected baccalaureate training opportunities, the main UTHSC campus is located in Memphis and includes six colleges: Allied Health Sciences,
Dentistry, Graduate Health Sciences, Medicine, Nursing and Pharmacy. UTHSC also educates and trains cohorts of medicine, pharmacy and/or allied health
students — in addition to medical residents and fellows — at its major sites in Knoxville, Chattanooga and Nashville. Founded in 1911, during its
more than 100 years, UT Health Science Center has educated and trained more than 56,000 health care professionals in academic settings and health care
facilities across the state. For more information, visit www.uthsc.edu.
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