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FEBRUARY 28 IS RARE DISEASE DAY. ONE IN TEN AMERICANS SUFFERS FROM RARE DISEASES? A RARE DISEASE IS DEFINED AS AFFECTING FEWER THAN 200 THOUSAND PEOPLE. BUT BECAUSE THERE ARE NEARLY 7,000 RARE DISEASES, THEY AFFECT NEARLY 30 MILLION AMERICANS.
Mike and Joyce speak with Gloria in Ireland. She shares her family's adventure in achieving a diagnosis of her daughter first for a brain tumor, and then for a rare syndrome, von Hippel-Lindau (VHL) which has implications for other kinds of tumors as well.
We learn how her persistence was essential in getting to a correct diagnosis and appropriate treatment for her daughter, who is now doing very well. There are lessons for all of us in trusting our own instincts, and in knowing what is normal and what is unusual in your own family members. The doctors bring their knowledge of the science and of sorting out what diagnosis might be right. The patient and the family bring their description of the symptoms the sequence of events, and the pattern of when the symptoms are better or worse. It is only through this partnership that we can get to a diagnosis, especially of a rare disease.
Dr. Ilene Sussman, Executive Director of the VHL Alliance, based in Boston, Massachusetts, speaks with Mike and Joyce about the celebration of Rare Disease Day being co-sponsored by the Alliance and the Massachusetts Biotechnology Council (MassBio), at the Massachusetts State House in Boston on February 28, 2014, 11-12 AM. The VHL Alliance is dedicated to research, education, and support to improve diagnosis, treatment, and quality of life for those affected by Von Hippel-Lindau (VHL).
Patricia Weltin, Founder and CEO of Rare Disease United, will speak with Mike and Joyce on Thursday, January 23. Patty's two daughters have a rare disease called "Hypermelanosis of Ito" (HI). She is not looking to educate you about HI. Instead she wants you to know that nearly 25% of the United States is affected, directly or indirectly, by some rare disease. Each individual rare disease may be rare (affecting less than 1% of the population), but the experience
Healthcare Whisperer welcomes back Mary Elizabeth Parker to the show. She is here to discuss her recent trip to Washington, DC to be a part of Rare Disease Week. She was involved in many events including meeting with several congress people. She will be discussing upcoming legislation, research and what is happening at the NIH Rare Disease Department. Mary Elizabeth is dedicated through her work with U R Our Hope, to helping families and individuals finds answers to undiagnos
Our guest this morning is Dr. Peter Katona.
Peter is Clinical Professor of Medicine in Infectious Diseases at the David Geffen School of Medicine at UCLA and Adjunct Professor of Public Health at the UCLA Fielding School of Public Health.
He has worked at the Centers for Disease Control and Prevention as an EIS Officer studying viral diseases and doing epidemic investigation; and at Apria/Corum Healthcare as their Corporate Medical Director.
Peter has held appointments at Louisiana State University’s National Center for Biomedical Research and Training and the Los Angeles County Emergency Management Services Agency.
He is an internationally recognized authority on bioterrorism and has lectured throughout the world on this topic.
He teaches a yearly Honors course at UCLA on terrorism and has edited the books Countering Terrorism and WMD: Creating a Global Counter-Terrorism Network, and Global Biosecurity: Threats and Responses, with a book on the vulnerability of healthcare to disasters in progress.
He also maintains a private practice in infectious diseases and internal medicine in Los Angeles.
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Who would have ever thought it? From a young child growing up, Flo always sensed tremendous change would someday take place in her life, but she never knew when. Florence Logan Worsham grew up in Halifax County, Virginia as the youngest among six siblings. Her mother became pregnant nine times but three children died at birth…with Flo still being the youngest. In that respect, she always knew within herself - if you were born on this earth - you have a purpose. What the heck is purpose anyway?
To some, the word lights a fire in their belly because they truly understand what it means to live life with a purpose or calling. Others will cringe at the word... what a silly word, purpose. They doubt that everyone (including themselves) has a purpose or that things really do happen for a reason. in this Broadcast Edition we will be speaking with Florence Worsham A Rare Woman that has a true purpose in Life and that is going somwwhere.
Today award-winning television host, popular cookbook author and vegan chef Laura Theodore, the Jazzy Vegetarian welcomes the internationally recognized expert on nutrition and health, Dr. Pam Popper to talk about Diseases and Foods That Bring them On. Jazzy Vegetarian Classics: Vegan Twists on American Family Favorites, Laura Theodore’s newest cookbook, is now available wherever fine books are sold, along with her popular book: Jazzy Vegetarian, Lively Vegan Cuisine That’s Easy and Delicious. Starting April 15th, a re-broadcast of Jazzy Vegetarian Season One, airs on the CREATE Channel all across the country. Dr. Pam Popper is a naturopath, an internationally recognized expert on nutrition and health the Founder and Executive Director of The Wellness Forum. Dr. Popper is the author of the popular and riveting new book Food Over Medicine and she part of Dr. T. Colin Campbell’s teaching team at eCornell. Learn more at: www.wellnessforum.com
A discussion about some possible spiritual roots for diseases, and cures, according to what the Bible says. There are trends I have observed with certain illnesses that I believe correlate to spiritual roots. If you find the spiritual root of a disease, I believe you also find the cure. Bear in mind, too, that some diseases come in generationally and the generational curse needs to be broken in those cases.