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Smoking with Spondylitis? What the Hell is Wrong with You?!

  • Post author:Patient Worthy Contributor
  • Post published:August 7, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

There are lots of ways to deal with stress. Some are healthy, some…not so much. For many, smoking is a “go-to” stress reliever. Never mind that it probably causes more…

Continue Reading Smoking with Spondylitis? What the Hell is Wrong with You?!

She Took Weed for Chronic Pain, Now She’s a Believer

  • Post author:Patient Worthy Contributor
  • Post published:August 6, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Should marijuana be used for medicinal purposes? We obviously aren't the first to ask this question as the nation debates the use of the famous Jamaican herb. But if ankylosing…

Continue Reading She Took Weed for Chronic Pain, Now She’s a Believer
This Girl Got a Kidney for Her Birthday, And It’s Awesome!

This Girl Got a Kidney for Her Birthday, And It’s Awesome!

  • Post author:Patient Worthy Contributor
  • Post published:August 6, 2015
  • Post category:Cystinosis/Rare Disease

For a "normal" teenage girl, life's biggest problems usually include not being able to decide which outfit to wear to school, which boy to say yes to for the upcoming…

Continue Reading This Girl Got a Kidney for Her Birthday, And It’s Awesome!

Man Embarks On 1800 km Bike Ride, All for this Little Girl

  • Post author:Patient Worthy Contributor
  • Post published:August 4, 2015
  • Post category:Cystinosis/Rare Disease

Dan Giancola is about to take the ride of this life. Literally. The St. Catharines Standard details his mission to raise more than $100,000 for Abbi, a nine-year-old girl fighting…

Continue Reading Man Embarks On 1800 km Bike Ride, All for this Little Girl

The Empire Strikes Back! This Company’s Valiant Effort Saves Lives

  • Post author:Patient Worthy Contributor
  • Post published:August 4, 2015
  • Post category:Familial Hypercholesterolemia/Rare Disease

July 21st, 2015: Pharmaceutical giant, Amgen, was awarded a stunning approval from the European Commission for Repatha, a breakthrough cholesterol-lowering drug as reported by the St. Louis Post-Dispatch. The drug…

Continue Reading The Empire Strikes Back! This Company’s Valiant Effort Saves Lives

Fear, Frustration, Hope, Acceptance: 4 Struggles of a CVID Diagnosis

  • Post author:Patient Worthy Contributor
  • Post published:August 4, 2015
  • Post category:CVID/Primary Immunodeficiencies

Kathy Antilla recalls the moment she heard her son, Issac, say those words she thought she'd never hear: "Mom! Look at me! I'm just like a normal kid now." In…

Continue Reading Fear, Frustration, Hope, Acceptance: 4 Struggles of a CVID Diagnosis

A Little Girl Enters a Room of Jocks, Leaves with Their Hearts

  • Post author:Patient Worthy Contributor
  • Post published:July 31, 2015
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

Olivia Trueb lives every teenage girl's dream. As in, she’s got a team of professional football players that are wrapped around her finger, and much to her surprise, she can…

Continue Reading A Little Girl Enters a Room of Jocks, Leaves with Their Hearts

This Woman Takes on the FDA in One Epic Battle

  • Post author:Patient Worthy Contributor
  • Post published:July 29, 2015
  • Post category:Familial Hypercholesterolemia/Homozygous Familial Hypercholesterolemia

No one knows the dangers of bad cholesterol better than patients with familial hypercholesterolemia (FH). According to the FH Foundation, there are two forms of FH. 1) HeFH, and 2)…

Continue Reading This Woman Takes on the FDA in One Epic Battle

You’ll Never Guess How Being Cheesy Saves This Girl’s Life

  • Post author:Patient Worthy Contributor
  • Post published:July 29, 2015
  • Post category:GLUT1 DS/Rare Disease

Most parents are eager for their child's first words. But as the Daily Mail in the UK reports,  Stevie and David Taylor waited in vain for three years to hear…

Continue Reading You’ll Never Guess How Being Cheesy Saves This Girl’s Life

Cops Raid These Kids’ Lemonade Stand, Ends Better Than You Think

  • Post author:Patient Worthy Contributor
  • Post published:July 28, 2015
  • Post category:Cystinosis/Rare Disease

Jake Krahe, a youngster from Montville Township, Ohio,  has been living with a rare disease since he was 19 months old 19 Action News reports. The specific diagnosis is cystinosis, a…

Continue Reading Cops Raid These Kids’ Lemonade Stand, Ends Better Than You Think

More Orphans Need to be Treated Like These FCS Patients

  • Post author:Patient Worthy Contributor
  • Post published:July 28, 2015
  • Post category:Familial Hypercholesterolemia/Rare Disease

If you’re one of the very few people in U.S. living with familial chylomicronemia syndrome (FCS), the odds are good you that you know more about it than your family…

Continue Reading More Orphans Need to be Treated Like These FCS Patients

Is the Answer to Glut1 DS Patients’ Seizures Really a Thermostat?

  • Post author:Patient Worthy Contributor
  • Post published:July 28, 2015
  • Post category:GLUT1 DS/Rare Disease

Glucose. It means sugar, right? It's in your body, right? But how does it get transported, and how does your body know how much it needs to transport? Most importantly,…

Continue Reading Is the Answer to Glut1 DS Patients’ Seizures Really a Thermostat?

How to Impress Your Trainer By Knowing These 5 Cholesterol Terms

  • Post author:Patient Worthy Contributor
  • Post published:July 27, 2015
  • Post category:Familial Hypercholesterolemia/Rare Disease

Heterozygous Familial Hypercholesterolemia (or HeFH), ever heard of it? It’s a mouthful. It’s also a condition that causes highly dangerous cholesterol levels and, if left untreated, can lead to heart…

Continue Reading How to Impress Your Trainer By Knowing These 5 Cholesterol Terms

3 Ways to Be a Badass Like This CVID Baseball Player

  • Post author:Patient Worthy Contributor
  • Post published:July 24, 2015
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

Mangled finger? Severe bone bruise? Broken back? Nope, this isn’t a catalog of injuries from Fight Club—these are some real injuries the Miami Herald describes that now 21 year old…

Continue Reading 3 Ways to Be a Badass Like This CVID Baseball Player
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