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How Can You Be a Powerful PKU Patient & Advocate for Yourself or a Loved One?
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Getting the best care for PKU, or any condition for that matter, requires you to be a proactive participant in your healthcare…to be a strong, but respectful advocate. Working closely with your metabolic team to manage your PKU yields the best results. Joining this discussion is an adult with PKU, a metabolic dietician, a social worker, and a medical doctor – all have devoted their lives to the care and management of PKU patients. Finding ways to successfully master the complexities of this specialized diet for you or a loved one is the goal of this Patient Power program.
Tim Kelly is 31-year-old with PKU. As a child he adhered to a strict low-protein diet, but as he entered adolescence, he slipped away from managing his Phe levels on a regular basis. As he came to grips with the seriousness of his condition, Tim sought care at Children’s Memorial Hospital where he met Lauren Leviton, a social worker who assisted him and other patients find their way back to good management of their Phe levels and most importantly, helped to maximize their potential for good health and productive lives. Dr. Gerard Vockley, Chief of Medical Genetics at the Children’s Hospital of Pittsburgh of UPMC, also joins the program to discuss the challenges for adults transitioning back to a PKU diet and the innovations in medications and low-protein foods to help patients like Tim keep their Phe levels low. Shideh Mofidi, a metabolic dietitian and clinical coordinator at the Maria Fareri Children’s Hospital at the Westchester Medical Center, joins the discussion to share her insight and offers a glimpse into the world of her PKU patients. She describes how difficult life can be when off diet, and strategies for positioning PKU management in positive ways for parents and children.
In this special edition program on Patient Power, each guest adds their voice to the message of self-advocacy. There are many ways a PKU patient can manage their condition effectively including honest communication with their healthcare providers, connecting with others with PKU, becoming involved in research, and finding the diet and medication strategies that work best. This program is packed with tips, ideas, and personal stories to help illuminate the roadmap to proactively getting on and staying on track with PKU.
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Gerard Vockley, M.D., Ph.D.
Chief of Medical Genetics, Children’s Hospital of Pittsburgh of UPMC
Dr. Gerard Vockley is Chief of Medical Genetics at the Children’s Hospital of Pittsburgh and also is a Professor of Pediatrics at the University of Pittsburg School of Medicine and Professor of Human Genetics at the Graduate School of Public Health. Dr. Vockley received his undergraduate degree at Carnegie-Mellon University in Pittsburgh, Pennsylvania, and received his degree in Medicine and...
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Shideh Mofidi, M.S., R.D., C.S.P.
Metabolic Dietitian and Clinical Coordinator in the Inherited Metabolic Disease Center, Maria Fareri Children’s Hospital
Shideh Mofidi is a Metabolic Dietitian and Clinical Coordinator in the Inherited Metabolic Disease Center at Maria Fareri Children's Hospital. She also serves as an Assistant Professor in the Department of Pediatrics. Ms. Mofidi received a Bachelor of Science degree in Chemistry from the University of Colorado and completed a Master of Science in Nutritional Sciences and Dietetics at San...
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Lauren Leviton, M.A., L.S.W.
Education Coordinator, Division of Genetics, Birth Defects & Metabolism, Children's Memorial Hospital
Lauren Leviton, M.A., L.S.W., is an Education Coordinator at Children’s Memorial Hospital in Chicago, Illinois. Ms. Leviton works with adult patients who have a diagnosis of Phenylketonuria (PKU) as a part of the Adult Outreach Program. This program was implemented to reengage adult patients who have not been in active follow up with the PKU Clinic to keep them informed...
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Tim Kelly,
Adult with PKU
Tim Kelly is a 31-year-old special education teacher living in the south suburbs of Chicago. He was diagnosed with PKU at birth and have been receiving treatment through Children's Memorial Hospital in Chicago ever since. Tim has been relatively lax about keeping up with his diet since adolescence, but has been in contact with the doctor's at Children’s Memorial over...
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