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Daily Archives: February 5, 2016

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Editor’s Choice: Art & Cystinosis PLUS Treatment Alternatives for Cystic Fibrosis

Editor’s Choice: Art & Cystinosis PLUS Treatment Alternatives for Cystic Fibrosis

  • Post author:Patient Worthy Contributor
  • Post published:February 5, 2016
  • Post category:Acromegaly/Cystic Fibrosis/Cystinosis/Myasthenia Gravis/Rare Disease

Happy First Week of February! Do you have a rare disease and find art as an outlet for you? Are you always fighting to find more ways to treat your…

Continue Reading Editor’s Choice: Art & Cystinosis PLUS Treatment Alternatives for Cystic Fibrosis
What You Need to Know About Mediocre CF Care

What You Need to Know About Mediocre CF Care

  • Post author:Kiki Jones
  • Post published:February 5, 2016
  • Post category:Cystic Fibrosis

My mom is a big believer in trying things. She never wanted her kids sitting still, so when we weren’t being unceremoniously pushed outside to hang out with neighbors, we were…

Continue Reading What You Need to Know About Mediocre CF Care
How to Hurry Up and Wait on Test Results

How to Hurry Up and Wait on Test Results

  • Post author:Patient Worthy Contributor
  • Post published:February 5, 2016
  • Post category:Lyme Disease

Recently I have been fortunate enough to be tested for remission from chronic Lyme disease. For those of you who haven't heard of the latest Lyme Antigen Test, it uses Nanotrap®…

Continue Reading How to Hurry Up and Wait on Test Results
Did People Think You Were Crazy to Get Pregnant?

Did People Think You Were Crazy to Get Pregnant?

  • Post author:EmpatheticBadass
  • Post published:February 5, 2016
  • Post category:Ehlers-Danlos Syndrome/HAE/Rare Disease

I read an article about pregnancy screening for disabilities recently. In it, there was one quote from a mom who has Ehlers-Danlos syndrome (EDS), an inherited condition which affects connective tissue and causes…

Continue Reading Did People Think You Were Crazy to Get Pregnant?
Conozcamos a Samanta: Ella Tiene Doce Diagnósticos que no Puedes Ver

Conozcamos a Samanta: Ella Tiene Doce Diagnósticos que no Puedes Ver

  • Post author:Patient Worthy Contributor
  • Post published:February 5, 2016
  • Post category:Rare Disease

Conozca a Samanta. Ella ha estado luchando contra una increíble cantidad de síntomas desde principios de 2012. Ella está actualmente diagnosticada con la enfermedad celíaca, colitis ulcerosa, gastritis, neuropatía autonómica,…

Continue Reading Conozcamos a Samanta: Ella Tiene Doce Diagnósticos que no Puedes Ver

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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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