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Heart to Heart with Anna

Heart to Heart with Anna

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January 28th 2014:NonCardiac Health Issues for Survivors with Complex Congenital Heart Defects

There are over one million adults alive with a congenital heart defect or CHD. Many surgeries performed on survivors are corrective but not curative. The non-cardiac health issues that seem to appear fairly regularly include, but are not limited to: problems with teeth, (i.e. an abscess, needing wisdom teeth removed or needing braces); scoliosis; problems with legs or feet requiring braces or surgery, pregnancy or female problems, male babies with undescended testicles or concern about circumcision, eye problems, protein-losing enteropathy, other intestinal problems, plastic bronchitis, asthma

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Featured Guests

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Lauren Bednarz

I am a 26-year-old congenital heart defect survivor born with tricuspid atresia, and a hypoplastic right ventricle. I basically have half a functioning heart and am currently 23 years post-Fontan. I was also born with congenital scoliosis and an eye muscle disease. I have been through two open-heart surgeries, three eye muscle surgeries, and the list goes on. From a young age I had anxiety about many things. I was called a "worry wart." As I got into my teenage and adult years, my anxiety got to the point of anxiety attacks. I feel that having a chronic illness played a big role in my anxiety and that it influenced my desire to earn a degree in psychology. I am in the process of becoming a c
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David Simpson, Ph.D.

David Simpson, Ph.D. has had a 20-year career in Medical Physics. He married his wife Helen in 1997. They have 3 children: Alasdair, Eleanor and Catherine. Alasdair was born with aortic atresia, a variant of hypoplastic left heart syndrome or HLHS. In October 2007 Alasdair developed protein-losing enteropathy or PLE, a potentially fatal condition. Knowing no one else with PLE, Helen and David were frustrated. The heart and intestinal specialists didn’t work together, even though PLE is not uncommon in HLHS survivors. They felt isolated until they discovered the Children’s Heart Fund, which was committed to finding a cure for PLE. David flew to the United States to meet with Dr. Jack Rych
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Dr. Amy Roberts

Dr. Amy Roberts is a cardiovascular geneticist and researcher. She is also an Assistant Professor of Medicine at Boston Children’s Hospital. She is board certified, specializing in Medical Genetics. She graduated from Dartmouth Medical School, completed a residency in pediatrics at the University of Massachusetts Medical Center and then completed a second residency in Medical Genetics at Harvard Medical School in 2004. Dr. Roberts is a published author, having articles published in peer-reviewed journals. She has done research specifically addressing Noonan Syndrome, Barth Syndrome, dilated and hypertrophic cardiomyopathy, and Potocki-Lupski syndrome. She has also done other research into
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