Pompe Disease Awareness

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Helping Shave Years Off a Patient’s Diagnostic Journey

Dr. Barry Byrne… Medical Geneticist- and Director of the University of Florida Powell Gene Therapy Center joins us on Access Health to raise awareness of a condition that is rare as well as life-threatening and is notorious for eluding a proper medical diagnosis sometimes for decades. It’s called POMPE (pom-PAY) Disease and it can be deadly especially if it’s not diagnosed. Pompe Disease is an inherited neuromuscular disease that causes buildup of GLYCOGEN in the cells and the accumulation of glycogen in certain organs and tissues, especially MUSCLES, impairing the patient’s ability to function normally. Pompe occurs in 1 in every 40,000 people in the U.S. and is considered a rare disease. Many Pompe symptoms are common to other muscular diseases such as Muscular Dystrophy which leads to an extremely high mis-diagnosis rate for Pompe sufferers and what can become a long journey for patients looking for answers. We’ll speak to a Pompe patient who has made it her mission to share her story and spread awareness as well as a Father who began as a caregiver and is now an active advocate for the Pompe community. Dr. Byrne will also share with us news of a Newborn Screening panel that can help parents who carry this gene get answers within days of birth. There is hope and treatment for Pompe-the answer is awareness.


Access Health



Access Health® Dedicates Show to Raising Awareness about Pompe Disease in Support of International Pompe Awareness Day on April 15 on Lifetime®

FOR IMMEDIATE RELEASE

Media Contact:
O2 Media
pamela@o2mediainc.com
(954) 691-1102

Access Health® Dedicates Show to Raising Awareness about Pompe Disease in Support of International Pompe Awareness Day on April 15 on Lifetime®

Dr. Barry Byrne, Medical Geneticist and Director of the University of Florida Powell Gene Therapy Center and a Pompe patient join Host Ereka Vetrini and our expert panelist to discuss this rare and life-threatening condition, and current screening tests

(POMPANO BEACH, Fla. – PR.Com – April 13, 2015) Access Health®, a magazine-style health and wellness series, will dedicate an entire 30-minute episode to raising awareness about Pompe Disease on Wednesday, April 15 at 7:30 a.m. (ET/PT) on Lifetime. Pompe Disease is a progressive neuromuscular disorder, and a form of Muscular Dystrophy. This “medical mystery” is a rare and potentially life-threatening disease that can present at any age.

In the first segment of this special show, “What is Pompe Disease?” (pronounced POM_PAY), Dr. Barry Byrne, Medical Geneticist and Director of the University of Florida Powell Gene Therapy Center and a Pompe patient joins Host Ereka Vetrini and the show’s Medical Expert Dr. Dennis Holmes to discuss this “medical mystery” that often eludes a proper diagnosis for decades; its definition, rarity, and symptoms — which may be common to other medical conditions.

Dr. Byrne will enlighten viewers about screenings tests and new options to better manage the disease that are giving hope to patients and doctors.

Two special guests will join the set for the “The Brave Faces of Pompe Disease” and “Advocacy and Resources” segments: a patient with this mysterious and rare disease, and a father of a son living with Pompe Disease who became an advocate for the Pompe community, as well as the resources and community of support they became a part of.

For more information, please visit: http://www.pompe.com/, http://www.amda-pompe.org/ or http://www.unitedpompe.com/

Access Health educates viewers as it tackles the important health and wellness topics of the day, including innovations in fitness, medicine and food such as women’s and children’s health, the best ways to get one’s body moving, how to prepare good-tasting and healthy meals, the newest medical practices, and insights to empower women and give them access to healthier living.

Access Health was created by O2 Media, producers of the long-running branded entertainment shows The Balancing Act®, Designing Spaces®, Mission Makeover®, and All Mixed Up™ all currently airing on Lifetime.

About Access Health
Access Health® is a powerful and engaging half-hour health and wellness series premiering on the Lifetime® channel, anchored by a panel of three renowned experts who tackle the important fitness, medical and nutrition topics of the day. The show educates and entertains with ideas on the best ways to get your body moving, revolutionary cuisine and the newest medical practices, all to empower women and give them access to healthier living.
To learn more about Access Health and to view a prior episode, please visit: http://www.accesshealth.tv
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