Wellness Wednesday: Ear Infections, Rare Diseases, Heart Health

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In this edition of Wellness Wednesday we’ll look at the new guidelines for treating ear infections, explore a rare neurological illness called Batten Disease, and celebrate American Heart Month by learning about the latest advances in cardiovascular technology.

Guests

  • Richard Rosenfeld, Professor and Chairman of Otolaryngology at the State University of New York Downstate Medical Center
  • Mary Dunkle, Vice President for Communications at the National Organization for Rare Diseases
  • Margie Frazier, Executive Director of Batten Disease Support and Research Association
  • Diane Gorgas,  Associate professor of emergency medicine at Wexner Medical Center, residency director of the EM training program, and columnist for the Columbus Dispatch

Join The Conversation

  • http://www.facebook.com/people/Chris-Hawkins/1038629719 Chris Hawkins

    I am a parent of two children with Juvenile Batten Disease.  Thank you for doing this story.  As you can imagine I had no idea what Batten Disease was before the diagnosis of our oldest son in June of 2006.  Unfortunately I do now, up close and personal, two times over.  We have only scratched the surface of what Batten Disease will do to my sons.  I have tears welling in my eyes just thinking about it.  I watch a little bit more of my son’s disappear every day and it breaks my heart.  But there is ALWAYS hope and with the help of great scientists, dedicated staff members and motivated families we will find a cure.  I tell you these things because I hope that you will take this information and share it with others, learn more about rare diseases like Batten Disease and help families like mine make sure that other families in the future do not have to go through what we are going through.

  • Rht3627

    Thank you Ann, Margie and Mary — I just listened to your segment talking about Batten Disease and other Rare Diseases, and I am grateful for all your efforts to spread the word among doctors, researchers and the world at large.  The time it took for our family to find out the name of the evil that was stealing our first grand child was unbearably difficult, and then came the fatal diagnosis. As my son-in-law says, he looks forward to the day when the sentence, “Your child has Batten Disease.” can be immediately followed by, “And this is how we cure it.”  Amen.

  • Info

    Thank you Margie and BDSRA for your efforts.  I lost Christopher at age 8 from Late Infantile Batten Disease.  Life is not the same.  We need a cure and awareness is key, thank you Mary and Margie for bringing more awareness to this subject.