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Daily Archives: February 11, 2016

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Not A Cure For POTS, But At Least There’s Hope

Not A Cure For POTS, But At Least There’s Hope

  • Post author:Patient Worthy Contributor
  • Post published:February 11, 2016
  • Post category:Dysautonomia/POTS/Rare Disease

It's the 'Lil Things.. So we're entering February. I had vowed to a "New Year...New Me." I wanted to find a sense of self worth, find my happiness, and seek…

Continue Reading Not A Cure For POTS, But At Least There’s Hope
Do You Have What It Takes To Complete Your Dystonia Destiny?

Do You Have What It Takes To Complete Your Dystonia Destiny?

  • Post author:Farrah Fontaine
  • Post published:February 11, 2016
  • Post category:Dystonia

Do you want to be part of cervical dystonia history? Do you want to actually get paid to take an injection to treat your symptoms? C'mon, you know the answer…

Continue Reading Do You Have What It Takes To Complete Your Dystonia Destiny?
How Is Acromegaly Not an Equal Opportunity Experience?

How Is Acromegaly Not an Equal Opportunity Experience?

  • Post author:Erica Zahn
  • Post published:February 11, 2016
  • Post category:Acromegaly

Acromegaly, also called gigantism, is diagnosed in only 1 in 20,000 people in the United States. In 95% of cases, it's caused by a benign tumor on the pituitary gland called an adenoma. Acromegaly causes…

Continue Reading How Is Acromegaly Not an Equal Opportunity Experience?
Cervical Dystonia Wasn’t in the Plot, But It Sure Changed the Story

Cervical Dystonia Wasn’t in the Plot, But It Sure Changed the Story

  • Post author:Erica Zahn
  • Post published:February 11, 2016
  • Post category:Dystonia

Michael White, a 45-year-old writer from Vancouver, British Colombia, put everything he had on the line to take a leap of faith and write a book about his passion: music.…

Continue Reading Cervical Dystonia Wasn’t in the Plot, But It Sure Changed the Story
LSD – It’s Not What You Think, Baby Boomer

LSD – It’s Not What You Think, Baby Boomer

  • Post author:Erica Zahn
  • Post published:February 11, 2016
  • Post category:Fabry Disease/Gaucher Disease/Pompe Disease

Lysosomal Storage Disorder, or LSD, is a catch-all term for more than 45 inherited metabolic disorders that result in the build-up of various toxins in the patient's cells. Currently, there is treatment…

Continue Reading LSD – It’s Not What You Think, Baby Boomer
Conozcamos a María: Detrás de Puertas Cerradas con SDRC

Conozcamos a María: Detrás de Puertas Cerradas con SDRC

  • Post author:Patient Worthy Contributor
  • Post published:February 11, 2016
  • Post category:Complex Regional Pain Syndrome/Rare Disease

Soy María; Soy una esposa y madre, fashionista y un entusiasta de zapato. No todos mis días son malos, pero nadie sabe acerca de los días realmente malos porque me…

Continue Reading Conozcamos a María: Detrás de Puertas Cerradas con SDRC

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Metastatic Breast Cancer: Navigating Grief


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Rethinking What It Means to Live With Acromegaly


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The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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