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Daily Archives: May 8, 2017

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Good News for ALS Patients: FDA Approves ALS Treatment
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Good News for ALS Patients: FDA Approves ALS Treatment

  • Post author:Rebekah
  • Post published:May 8, 2017
  • Post category:Amyotrophic Lateral Sclerosis/Timely

Friday was an incredibly important day. Yes, it was Cinco De Mayo, but it was also the first time the FDA has approved a treatment for ALS (Lou Gehrig’s Disease) in…

Continue Reading Good News for ALS Patients: FDA Approves ALS Treatment
Do You Know Enough About Cystic Fibrosis and “Old People’s Tests”?
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Do You Know Enough About Cystic Fibrosis and “Old People’s Tests”?

  • Post author:PW Blogger
  • Post published:May 8, 2017
  • Post category:Cystic Fibrosis/Rare Disease

As a registered nurse, I have taken care of a fair share of the senior population. I have heard some great stories and also some funny quotes. Several older individuals…

Continue Reading Do You Know Enough About Cystic Fibrosis and “Old People’s Tests”?
What You Need to Know About PBC and Thyroid Disease
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What You Need to Know About PBC and Thyroid Disease

  • Post author:Jennifer Walker
  • Post published:May 8, 2017
  • Post category:Primary Biliary Cholangitis/Rare Disease

If you're one of the extra rare people with Primary Biliary Cholangitis and a thyroid disease, this new research might put a smile on your face! But let's make sure we're all on…

Continue Reading What You Need to Know About PBC and Thyroid Disease
This Teen with POTS is a True Comeback Kid!
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This Teen with POTS is a True Comeback Kid!

  • Post author:Sabina Kennedy
  • Post published:May 8, 2017
  • Post category:Dysautonomia/POTS/Rare Disease

Who doesn’t like a good comeback story? Especially when it's about POTS? There are far, far, far too many challenges in life that can make a person come undone. From…

Continue Reading This Teen with POTS is a True Comeback Kid!
Woman Battling NASH is Proud to “Fight Like a Girl”
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Woman Battling NASH is Proud to “Fight Like a Girl”

  • Post author:Alexa Lee
  • Post published:May 8, 2017
  • Post category:Nonalcoholic steatohepatitis/Rare Disease

To put it lightly, the phrase “fight like a girl” isn’t exactly music to my ears. But when women take ownership of the saying, re-claim it in a way, that’s…

Continue Reading Woman Battling NASH is Proud to “Fight Like a Girl”
My Life with Lyme

My Life with Lyme

  • Post author:Patient Worthy Contributor
  • Post published:May 8, 2017
  • Post category:Lyme Disease/Rare Disease

"I have chronic Lyme Disease and it's chronic because it took so long to get it treated." William and Mary student Alexis Plofchan is the subject of a seven-minute documentary directed by…

Continue Reading My Life with Lyme
Adolescent’s Mysterious Symptoms Yield Startling Diagnosis
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Adolescent’s Mysterious Symptoms Yield Startling Diagnosis

  • Post author:Al Pendleton
  • Post published:May 8, 2017
  • Post category:Dysautonomia/Rare Disease

A quick search of the Internet will tell you that fatigue is a common symptom of almost every disease, disorder, and syndrome. There are other symptoms that tend to be…

Continue Reading Adolescent’s Mysterious Symptoms Yield Startling Diagnosis
It’s a Bloody Mess to be One in a Million
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It’s a Bloody Mess to be One in a Million

  • Post author:Al Pendleton
  • Post published:May 8, 2017
  • Post category:Glanzmann thrombasthenia/Rare Disease

Has anyone ever called you one in a million? You took it as a compliment, no doubt. Maybe you saw this as someone saying that you’re special, you’re unique, you’re…

Continue Reading It’s a Bloody Mess to be One in a Million

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