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Phenylketonuria (PKU) Audio Programs

Lifting the Fog: Sharp Thinking with PKU
Many people with PKU describe being on a well-managed diet and treatment plan as feeling like a “fog has been lifted.” Whether it is trouble concentrating or difficulty with planning,...
by Patient Power | 11/03/2011
PKU: 4 Keys to the Foundation for a Healthy Life
In this webcast, co-hosted by Andrew Schorr and PKU patient advocate Hunter Rametta, renowned expert Dr. Susan Waisbren from Harvard Medical School explains her strategies for helping children and young adults...
by Patient Power | 08/26/2011
Understanding Treatment Options for Phenylketonuria (Originally Broadcast in French)
Understanding Treatment Options for Phenylketonuria (PKU) with Dr. John Mitchell and Marie LeFrancois from Montreal Children's Hospital.  Expert guests help listeners to understand PKU and the latest treatment options available...
by Patient Power | 01/12/2011
Comprendre la phénylcétonurie
by Patient Power | 01/12/2011
Commentary: Young Adults with PKU: Transitioning to Life on Your Own
This program is a Spanish commentary from Dr. Loren Peña sharing advice for controlling Phe when making life transitions. Learn about the impact Phe levels have on your cognitive and...
by Patient Power | 09/17/2010
Comentario de español: Jóvenes con PKU: La Transición a una Vida Propia
Hacer la transición a una vida independiente puede ser difícil, aún en las personas que no tienen fenilcetonuria. En este programa, le proveemos consejos para controlar su nivel de fenilanina...
by Patient Power | 09/17/2010
Young Adults with PKU: Transitioning to Life on Your Own
For those with PKU, life transitions can present different challenges whether you’ve been on diet your whole life or are just beginning to return to clinic as an adult.  In...
by Patient Power | 09/16/2010
Comentario de español: Logre una Mejor Salud con la Dieta PKU: ¿Qué Hay de Nuevo?
Este programa se enfoca en la importancia de planear su dieta fenilcetonúrica con alimentos que sean saludables y con una fórmula metabólica que le sea agradable al paladar. Escuchamos las...
by Patient Power | 08/23/2010
Comentario de español: PKU y el EMBARAZO: Disminuya los Riesgos y Tenga un Bebé Sano
Comentamos acerca de varios mensajes importantes que las mujeres con fenilcetonuria que piensan tener una familia deben considerar, incluyendo el impacto que el nivel de fenilalanina puede tener en la...
by Patient Power | 08/23/2010
Comentario de español: Consejos para Adultos con PKU: Mejorando su Vida al Regresar a la Dieta
En este programa, comentamos acerca de las limitaciones que se pueden encontrar al retornar a la dieta fenilcetonúrica de adulto y que instrumentos nuevos existen para regresar a la dieta.
by Patient Power | 08/23/2010
Commentary: Pregnancy and Phenylketonuria: Lowering Your Risks and Having a Healthy Baby
Dr. Loren Peña provides a Spanish commentary on the key messages that women of childbearing age need to know and how to make critical decisions when planning your future. You’ll...
by Patient Power | 08/23/2010
Commentary: Achieving Better Health While on the PKU Diet: What’s New?
This program is a Spanish commentary from Dr. Loren Peña focusing on the importance of making smart PKU food choices to maximize overall health and man- age weight while maintaining...
by Patient Power | 08/23/2010
Commentary: Advice for Adults with PKU: Improving Your Life by Returning to Diet
In this program, Dr. Loren Peña provides a Spanish commentary on the the issues of returning to diet as an adult and what new tools are available to help you...
by Patient Power | 08/23/2010
Achieving Better Health While on the PKU Diet: What’s New?
It's no secret that the PKU diet is restrictive, but is it healthy? Although your phe level is well managed, are YOU healthy? In this Patient Power program two dieticians...
by Patient Power | 05/04/2010
PKU & Pregnancy: Lowering the Risks & Having a Healthy Baby
Can you have a healthy baby if you're living with PKU? Yes, but what support do you need to make it happen? In this Patient Power program, metabolic experts discuss...
by Patient Power | 04/13/2010
Advice for Adults with PKU: Improving Your Life by Returning to Diet
Adults living with PKU may have childhood memories filled with thoughts of chalky formula and limited food choices, but this is no longer the case. The PKU diet and treatment...
by Patient Power | 03/11/2010
How Can You Be a Powerful PKU Patient & Advocate for Yourself or a Loved One?
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...
by Patient Power | 08/13/2009
How Does PKU Affect You and Your Relationships? A Look at Managing PKU from Many Perspectives.
Most people don’t know what PKU is. This can make it difficult to deal with in social situations, at school, or on the job. What is the best way to...
by Patient Power | 07/07/2009
Strategies for A Tastier PKU Diet
On location at The Children's Hospital in Aurora, Colorado, Patient Power host, Andrew Schorr, sat down with leading dietitian Laurie Bernstein, Director of Inherited Metabolic Disease Nutrition. Laurie is dedicated,...
by Patient Power | 07/06/2009
What Are the Problems When PKU is Not Treated Effectively?
So you think your Phe is under control, but how can you tell when it’s not? Do high Phe levels affect your ability to recognize changes in behavior? Is it...
by Patient Power | 06/11/2009
Qué problemas pueden surgir si no se trata la PKU de manera eficaz?
Digamos que usted piensa que su fenilalanina está bajo control. Sin embargo, ¿có mo puede saber si no lo está? Y si sus niveles de fenilalanina están altos, ¿se afecta...
by Patient Power | 06/11/2009
How Confident Can You Be with Your PKU Treatment Plan?
Even when you or your loved one is following your PKU diet properly and getting regular checkups, don’t you still wonder am I doing enough? Is my PKU treatment plan...
by Patient Power | 05/19/2009
How Do You Pay for New PKU Medicines? What Resources are Available?
Most everyone in America, if they have PKU or not, deals with insurance or sometimes lack of insurance and reimbursement issues. In this Patient Power program experts from various organizations...
by Patient Power | 04/30/2009
Cómo pagar los nuevos medicamentos para la PKU: Recursos disponibles
En los Estados Unidos de hoy, prâ cticamente todas las personas —tengan o no fenilcetonuria— tienen que lidiar con problemas de seguro o de falta de seguro, y, por supuesto,...
by Patient Power | 04/30/2009
What is Quality PKU Care Today? And How Do You Get It for You or a Loved One?
In this first program in Patient Power’s 2009 PKU series, guests discuss how to get access to the best care for you or a loved one. Joining Andrew for this...
by Patient Power | 04/07/2009
Managing PKU at Any Age
The PKU diet can be difficult to follow at any age. For children, and those going through adolescence, "fitting in" becomes a factor. PKU patients who are pregnant deal with...
by Patient Power | 10/28/2008
Protecting Your Brain from Phe Build-up
For those living with PKU, unsafe levels of phenylalanine can affect brain development, cognitive function and in some cases, lead to mental retardation. What's a safe level for you or...
by Patient Power | 10/07/2008
Long Term Safety of Medications for PKU
Up until very recently, PKU has been treated solely by eliminating phenylalanine from the diet. With new medications becoming available, and in some cases changing lives, long term safety of...
by Patient Power | 09/23/2008
Transition and Self-Advocacy: The Medical Home and Care Coordination
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features Dr. Laura Pickler from...
by Patient Power | 08/16/2008
Metabolic Resources Coming of Age: The Adult PKU Clinic
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features genetic counselor, Monica Giovanni...
by Patient Power | 08/16/2008
Negotiating Resources and Self-Advocacy
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features social worker, Hazel Vespa...
by Patient Power | 08/16/2008
Strategies for the Prevention of Bone Disease in Teens and Young Adults with PKU
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features dietitian, Valerie Austin R.D.,...
by Patient Power | 08/16/2008
Sports Nutrition and PKU
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features Melissa Edwards a licensed...
by Patient Power | 08/16/2008
A Case Study of Weight Loss and PKU
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features metabolic dietitian, Maggie Davis...
by Patient Power | 08/16/2008
Hurricane Katrina: Lessons Learned for Disaster Preparedness
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features dietitian, Amy Cunningham from...
by Patient Power | 08/16/2008
The History of PKU
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features Dr. Richard Koch, a...
by Patient Power | 08/15/2008
Newborn Screening for PKU in Illinois
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features Michael Petros M.S., M.P.H.,...
by Patient Power | 08/15/2008
The Treatment of PKU with Kuvan
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features Dr. Barbara Burton a...
by Patient Power | 08/15/2008
Practical Management of PKU Incorporating Kuvan and Diet
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features Heather Bausell, a registered...
by Patient Power | 08/15/2008
Phenylalanine Ammonia Lyase - Enzyme Substitution Therapy for PKU; What Lies Ahead In The Absence of BH4 Responsiveness
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features Dr. Christenah Sarkissian from...
by Patient Power | 08/15/2008
Straight Talk about Thinking Straight: How PKU Sometimes Gets In The Way And What To Do About It
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features Dr. Susan Waisbren from...
by Patient Power | 08/15/2008
New Ways to Feel Good About You and Your PKU
This audio was taken from the first International Conference for Adults and Teens with PKU and allied metabolic disorders in Chicago in 2008. This presentation features Lisa Irgang, a clinical...
by Patient Power | 08/15/2008
Living with PKU: Patient Approaches to the Management of PKU
In this Patient Power Special Edition PKU program, Debra Hook, a metabolic dietician, joins host Andrew Schorr to discuss strategies to live well with the rare genetic condition, phenylketonuria (PKU)....
by Patient Power | 06/19/2008
Access to Care: Insurance and Reimbursement Support Programs for New PKU Treatments
Medication for PKU is costly, but there are resources available to help you work with your insurer as well as assistance programs to supplement the cost. In this second program...
by Patient Power | 05/27/2008
Understanding PKU and New Treatment Options
Phenylketonuria (PKU) is a serious, lifelong, inherited condition that requires constant attention from patients and families. The good news is, now more than ever, PKU is a treatable condition. In...
by Patient Power | 05/08/2008