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Daily Archives: June 30, 2016

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Jessica Sees Herself As Rocky

Jessica Sees Herself As Rocky

  • Post author:Kristen Lord
  • Post published:June 30, 2016
  • Post category:Myasthenia Gravis/Rare Disease

Jessica Gimeno has five diseases, one of those is myasthenia gravis. In her Ted Talk she talks about dealing with those, along with having depression. Go watch! I love that she…

Continue Reading Jessica Sees Herself As Rocky
The Astonishing Way This Community Supports POTS

The Astonishing Way This Community Supports POTS

  • Post author:PW Blogger
  • Post published:June 30, 2016
  • Post category:Dysautonomia/POTS/Rare Disease

Nicole graduated high school, but was forced to withdraw from college because she suffers from dysautonomia, particularly postural orthostatic tachycardia syndrome (POTS). This disorder causes rapid heartbeat, fainting spells upon standing,…

Continue Reading The Astonishing Way This Community Supports POTS
You Won’t Believe What This 10-Year-Old Boy with HoFH Did

You Won’t Believe What This 10-Year-Old Boy with HoFH Did

  • Post author:PW Blogger
  • Post published:June 30, 2016
  • Post category:Homozygous Familial Hypercholesterolemia/Rare Disease

Doctors in New Delhi, India recently made history by performing a heart bypass surgery on a young boy who has the rare condition called homozygous familial hypercholesterolemia, or HoFH. The…

Continue Reading You Won’t Believe What This 10-Year-Old Boy with HoFH Did
Sometimes it’s Just Nice to be Heard

Sometimes it’s Just Nice to be Heard

  • Post author:Kristen Lord
  • Post published:June 30, 2016
  • Post category:Myasthenia Gravis/Rare Disease

Have you heard of myasthenia gravis? If not, that's not surprising considering it is a rare disease, with about 20 out of 100,000 known sufferers. However it is probably under-diagnosed and those…

Continue Reading Sometimes it’s Just Nice to be Heard
A Love Story of a Dog, a Girl, and EDS

A Love Story of a Dog, a Girl, and EDS

  • Post author:Erica Zahn
  • Post published:June 30, 2016
  • Post category:Ehlers-Danlos Syndrome/POTS/Rare Disease

Sixteen-year-old Sydney Rohmann has a number of rare conditions that have left her in a wheelchair. Among them are Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS). She has even had brain…

Continue Reading A Love Story of a Dog, a Girl, and EDS
From Asthma to Incapacitated: The Deadly Disguise of a Rare Disease
Pixabay

From Asthma to Incapacitated: The Deadly Disguise of a Rare Disease

  • Post author:PW Blogger
  • Post published:June 30, 2016
  • Post category:Churg-Strauss Syndrome/Rare Disease

Q: When is asthma not just asthma? A: When it's a symptom of Churg-Strauss syndrome. Five and a half years ago, in January 2011, Carole Cordum thought that her asthma was…

Continue Reading From Asthma to Incapacitated: The Deadly Disguise of a Rare Disease
Myasthenia Gravis Swag

Myasthenia Gravis Swag

  • Post author:Kristen Lord
  • Post published:June 30, 2016
  • Post category:Myasthenia Gravis/Rare Disease

One way people spread awareness is by wearing shirts and other items with messages about what they support. If you want to be one of those people and you want to…

Continue Reading Myasthenia Gravis Swag
Pulmonary Fibrosis Foundation Care Center Network Adds 19 New Sites
[Source: Pixabay]

Pulmonary Fibrosis Foundation Care Center Network Adds 19 New Sites

  • Post author:Farrah Fontaine
  • Post published:June 30, 2016
  • Post category:IPF/Rare Disease

One of the difficulties facing the IPF community has been a lack of knowledge and awareness about the disease among many doctors and even specialists. An aggressive disease, idiopathic pulmonary…

Continue Reading Pulmonary Fibrosis Foundation Care Center Network Adds 19 New Sites
Un perro en la correa vale media hora en el sofá
https://pixabay.com/en/bed-dog-animals-dogs-pets-relax-1284238/

Un perro en la correa vale media hora en el sofá

  • Post author:Patient Worthy Contributor
  • Post published:June 30, 2016
  • Post category:CVID/Rare Disease

Zebra’s Child un blogger que tiene inmunodeficiencia variable común, recientemente publicado acerca de la lucha que ella misma hallazgos mirando a la cara a primera hora de la mañana. Mientras se…

Continue Reading Un perro en la correa vale media hora en el sofá
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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