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ehlers-danlos support

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A Patient Living with Multiple Rare Conditions Has Invented a New Infusion Aid for Treatment of Chronic Illness

A Patient Living with Multiple Rare Conditions Has Invented a New Infusion Aid for Treatment of Chronic Illness

  • Post author:Patient Worthy Contributor
  • Post published:July 8, 2025
  • Post category:Myasthenia Gravis

In 2017, Jamie Shultz was feeling on top of the world. She was 25 years old, engaged to the man of her dreams, had just passed the Bar exam, and…

Continue Reading A Patient Living with Multiple Rare Conditions Has Invented a New Infusion Aid for Treatment of Chronic Illness
Fight Rare EDS with Direct Patient Advocacy
Source: pixabay.com

Fight Rare EDS with Direct Patient Advocacy

  • Post author:Sabina Kennedy
  • Post published:November 1, 2016
  • Post category:Ehlers-Danlos Syndrome/Rare Disease

I have to admit that I had tunnel vision when it comes to patient advocacy. I naively thought that everyone was direct and honest with their doctors. I believed that…

Continue Reading Fight Rare EDS with Direct Patient Advocacy
12 Things This Woman Wants You to Know About Ehlers-Danlos Syndrome
Pixabay

12 Things This Woman Wants You to Know About Ehlers-Danlos Syndrome

  • Post author:Alisha Stone
  • Post published:October 21, 2016
  • Post category:Ehlers-Danlos Syndrome/Rare Disease

I read an interesting article posted on Living the Diagnosis by Vicky Warren. I’ve got to applaud her for sheading more light on Ehlers-Danlos syndrome (EDS), a genetic rare disease/syndrome.…

Continue Reading 12 Things This Woman Wants You to Know About Ehlers-Danlos Syndrome
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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