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Daily Archives: December 15, 2015

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Mary’s Chronic Balancing Act -Part 1

Mary’s Chronic Balancing Act -Part 1

  • Post author:Rebekah
  • Post published:December 15, 2015
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

Mary is a former registered nurse, a mother to four daughters, a wife, and a grandmother to one grandson as well as several “grandpets”. She’s an avid gardener; growing cherry…

Continue Reading Mary’s Chronic Balancing Act -Part 1
The Oley Foundation: A Lifeline of Support

The Oley Foundation: A Lifeline of Support

  • Post author:Patient Worthy Contributor
  • Post published:December 15, 2015
  • Post category:Rare Disease

The Oley Foundation is a lifeline of support for those dependent on home IV nutrition (HPN) or tube feeding (HEN). There are many causes for the inability to adequately nourish…

Continue Reading The Oley Foundation: A Lifeline of Support

How to Classify Narcolepsy as an Autoimmune Disease

  • Post author:Erica Zahn
  • Post published:December 15, 2015
  • Post category:Narcolepsy/Rare Disease

If you have narcolepsy, excessive daytime sleepiness, and/or cataplexy, you know how hard it can be to function in "real-world" time. And while treatments have improved, there is still no…

Continue Reading How to Classify Narcolepsy as an Autoimmune Disease
Woman’s Battle with CF Ends with Successful Lung Transplant
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Woman’s Battle with CF Ends with Successful Lung Transplant

  • Post author:Erica Zahn
  • Post published:December 15, 2015
  • Post category:Cystic Fibrosis/Rare Disease

Over the past few years, Casey Higgins, a 27-year-old Ohio woman, has required supplementary oxygen 24/7 to help her breathe. Diagnosed with the genetic disease cystic fibrosis at the age of…

Continue Reading Woman’s Battle with CF Ends with Successful Lung Transplant
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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