Understanding & Living with Pompe Disease
It’s a devastating medical mystery: random symptoms that present in many common diseases; low awareness and misconceptions among physicians; rare incidence and lack of awareness about the disease’s existence. Chances are you’ve never heard of Pompe disease – a degenerative, genetic neuromuscular disease. But thanks to specialists like Dr. Barry Byrne, medical geneticist and Genzyme, leader in discovering and delivering transformative therapies for patients with rare genetic conditions, awareness of Pompe symptoms and disease management is growing. By increasing awareness, physicians can achieve earlier diagnoses and patients can be armed with self-advocacy and better quality of life.
Living with A Rare Disorder
Pompe disease is a rare, potentially life-threatening neuromuscular disorder
Imagine living with random medical symptoms that don’t seem to add up…going from doctor to doctor to doctor without answers…and possibly even being mis-diagnosed for years?
That’s what many people with Pompe disease or those who have children with it have experienced.
In case you haven’t heard of it, Pompe disease is a rare, potentially life-threatening neuromuscular disorder resulting in progressive degenerative muscle weakness.
The signs and symptoms of Pompe disease can vary widely, including difficulty breathing and muscle weakness, and emerge as early as infancy to later in adulthood.
Watch the compelling segment on The Balancing Act on Lifetime on Tuesday, June 3rd and 10th, 2014 at 7:00 am (ET/PT) as Dr. Barry Byrne, MD, Ph.D, Director, University of Florida Powell Gene Therapy Center and four adult patients living with this rare disease share their stories:
o Jenny – diagnosed in her 40’s, developed some weakness and ended up in the hospital with high CPK count
o Alison – 26, diagnosed with Pompe Disease at age 25; in early 20’s her weight dropped to 92 pounds and she experienced difficulty breathing
o Brian – diagnosed in 2002 at age 39 after a 3 year medical quest for diagnosis
By increasing awareness, physicians will be armed with the information needed to suspect Pompe and subsequently diagnose Pompe disease early. Early diagnosis and disease education is key in this progressively debilitating and sometimes fatal disease. Pay attention to your body and be your own advocate.
The Balancing Act® on Lifetime Talks Pompe Disease
FOR IMMEDIATE RELEASE
O2 Media, Inc.
The Balancing Act® on Lifetime Talks Pompe Disease, Diagnostic Health Tests Online, and Anti-Aging Pet Supplement
Pompe Disease, PAML and Adaptogenerations take center stage on June 3rd show
(POMPANO BEACH, Fla. – PR LOG – May 31, 2014) Award-winning morning show The Balancing Act® airing on the Lifetime® Channel will feature PAML and their online diagnostic health tests, dual segments on Pompe disease as part of the show’s “Behind the Mystery of RARE and Genetic Diseases” series, and an anti-aging supplement for pets. Make sure to tune in on Tuesday, June 3rd at 7:00 a.m. (ET/PT) as The Balancing Act hosts help jump start the day with in-depth conversation and trusted information to empower a woman’s life.
Don’t miss these featured segments taking center stage on The Balancing Act:
– Behind the Mystery of Pompe Disease
It’s a devastating medical mystery: random symptoms that present in many common diseases; low awareness and misconceptions among physicians; rare incidence and lack of awareness about the disease’s existence. Chances are you’ve never heard of Pompe disease – a degenerative, genetic neuromuscular disease. But thanks to specialists like Dr. Barry Byrne, medical geneticist, awareness of Pompe symptoms and disease management is growing. By increasing awareness, physicians can achieve earlier diagnoses and patients can be armed with disease information, allowing them to more successfully self-advocate and manage Pompe. http://www.pompe.com/
– Diagnostic Health Tests Online – with PAML
Consumers are more empowered than ever when it comes to their healthcare. Did you know that 52% of smart phone users have downloaded health apps onto their phones? Not only that, 59% of adults have used the internet to find health information in the past year. Well now, it’s possible to order your own health diagnostics and screening tests online from the comfort of your own home. Dr. Francisco Velázquez from PAML joins us to explain how patients are empowering themselves and managing their health care with laboratory testing. http://www.gocinch.com
-Anti-Aging Pet Supplement Breakthrough – with Adaptogenerations
Pets are part of our families…so providing them with all the best options when it comes to their health only makes sense. Marcus Gitterle, Chief Clinical Officer of Adaptogenerations joins us to explain how with a simple, once daily application to your pet’s preferred food — dry or moist — Revitamal restores cellular energy, and the most powerful anti-oxidant function available, protecting your pet where they need it the most, the vulnerable cells and tissues where aging has the deepest effects! http://www.Revitamal.com
About The Balancing Act® on Lifetime® Television
Now in its 6th year, The Balancing Act continues to empower women in all aspects of their lives. The mission at The Balancing Act is simple – the show strives to help today’s modern woman balance it all by bringing them exceptional solutions to everyday problems. Entertaining, educational and trusted by women, viewers can tune in to America’s premier morning show The Balancing Act on weekday mornings at 7:00 am (ET/PT) airing on Lifetime television. For additional information or to view a segment visit: http://www.thebalancingact.com
For more information regarding O2 Media Inc. Branded Entertainment, Product Placement and TV Brand Integration go to: http://o2mediainc.com/Pages/187/Branded-Entertainment
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