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Rare Disease

Home » Rare Disease » Page 286
Move Over Barbie. This is the Model Little Girls Should Idolize

Move Over Barbie. This is the Model Little Girls Should Idolize

  • Post author:Rebekah
  • Post published:July 31, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Charis is a Californian, advocate, activist, avid biker, blogger, and model. She was awarded the  2014 Progress in Policy Award by the Arthritis Foundation, Pacific Region last December for her efforts…

Continue Reading Move Over Barbie. This is the Model Little Girls Should Idolize

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 Stop Your Child’s Seizures with a Magic Bean
Pixabay

How to Stop Your Child’s Seizures with a Magic Bean

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

Have you ever heard of Glut1 deficiency? Based on a story featured on News-Medical, neither had the parents of their diagnosed daughter 4-year-old Chloe Olivarez. Glut1 deficiency is a rare…

Continue Reading How to Stop Your Child’s Seizures with a Magic Bean

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

CGD Used to be a Death Sentence, Until Women Like This Took Action

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

It’s not often that rare diseases cross with pop culture, but when they do, it’s worth tuning in. This summer, Lifetime Television show, “The Balancing Act,” featured an educational episode…

Continue Reading CGD Used to be a Death Sentence, Until Women Like This Took Action

An Art Exhibit is Traveling 6000 miles, Here’s Why You Should Care

  • Post author:Patient Worthy Contributor
  • Post published:July 23, 2015
  • Post category:Cystinosis/Rare Disease

For a disease that has so little attention drawn to it, there’s quite a few people that want to bring it to the forefront in the form of a traveling…

Continue Reading An Art Exhibit is Traveling 6000 miles, Here’s Why You Should Care

This Little Girl’s Diet Will Make You Wish You Had a Rare Disease

  • Post author:Patient Worthy Contributor
  • Post published:July 23, 2015
  • Post category:GLUT1 DS/Rare Disease

If your doctor told you that you could eat pizza, meat, and other high-fat foods daily you would probably sign up for that prescription immediately. But if the catch was…

Continue Reading This Little Girl’s Diet Will Make You Wish You Had a Rare Disease

These Smelly Rodents’ Sacrifice for Children Will Warm Your Heart

  • Post author:Patient Worthy Contributor
  • Post published:July 22, 2015
  • Post category:CGD/Primary Immunodeficiencies/Rare Disease

When you have a rare disease like chronic granulomatous disease (CGD) and have spent the better part of your life being poked and prodded by (hopefully) well-meaning doctors, it’s easy to feel…

Continue Reading These Smelly Rodents’ Sacrifice for Children Will Warm Your Heart

Is the New FH Drug Inspired by Star Wars? Who Cares, It Works

  • Post author:Patient Worthy Contributor
  • Post published:July 22, 2015
  • Post category:Familial Hypercholesterolemia/Homozygous Familial Hypercholesterolemia/Rare Disease

Standing in front of a crowd and talking about your HoFH can be intimidating. Imagine if that crowd was a panel of doctors and scientists with the US Food and…

Continue Reading Is the New FH Drug Inspired by Star Wars? Who Cares, It Works

What This Grandfather Does for His Grandson Makes Us All Jealous

  • Post author:Patient Worthy Contributor
  • Post published:July 21, 2015
  • Post category:Cystinosis/Rare Disease

Now in its fifth year, a team of highly motivated cyclists from Sandpoint has once again pedaled some 3,000 arduous miles across the United States, participating in the annual Race…

Continue Reading What This Grandfather Does for His Grandson Makes Us All Jealous

I’m Chronically Sick and You Want Me to See a Chiropractor?!

  • Post author:Patient Worthy Contributor
  • Post published:July 20, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

I can't tell you how many conversations I've heard between someone living with a chronic illness and a skeptic who is simply baffled by what they are hearing. To many…

Continue Reading I’m Chronically Sick and You Want Me to See a Chiropractor?!

5 Symptoms That Will Make You Think You Have Ankylosing Spondylitis

  • Post author:Patient Worthy Contributor
  • Post published:July 17, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

For those who have been diagnosed with a chronic disease, you know it can be quite the process. And ankylosing spondylitis (AS) is no exception, especially because its symptoms can…

Continue Reading 5 Symptoms That Will Make You Think You Have Ankylosing Spondylitis
This is what staring CVID in the face and kneeing it in the groin looks like

This is what staring CVID in the face and kneeing it in the groin looks like

  • Post author:Rebekah
  • Post published:July 17, 2015
  • Post category:CVID/Rare Disease

Anyone diagnosed with a chronic illness has two choices. Option 1: Accept it, live life idly, and wait to meet your maker. OR Option 2: Accept it, learn what the…

Continue Reading This is what staring CVID in the face and kneeing it in the groin looks like
How to Face Muckle-Wells and Look Sexy Doing It

How to Face Muckle-Wells and Look Sexy Doing It

  • Post author:Patient Worthy Contributor
  • Post published:July 16, 2015
  • Post category:CAPS/Muckle-Wells Syndrome/Rare Disease

Muckle-Wells Syndrome (MWS) It's rare. It's real. It's ready to cause undue inflammation throughout one's whole body with symptoms such as fever, arthritis, and malaise. This genetic disease posed a…

Continue Reading How to Face Muckle-Wells and Look Sexy Doing It

The Back Bone is Connected to the… Eye Bone?

  • Post author:Patient Worthy Contributor
  • Post published:July 15, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Think you know all there is to know about ankylosing spondylitis (AS)? Think again. New research has revealed that people with AS are at a greater risk for having acute anterior…

Continue Reading The Back Bone is Connected to the… Eye Bone?

Finally, These Two Doctors Find the “Missing Link”

  • Post author:Patient Worthy Contributor
  • Post published:July 14, 2015
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

Scientists Make Key Discovery in Rare Disease Category A gene that may play a role in solving the mysteries of autoimmune diseases such as type 1 diabetes, rheumatoid arthritis, and…

Continue Reading Finally, These Two Doctors Find the “Missing Link”

A Dog on the Leash is Worth a Half Hour on the Couch

  • Post author:Patient Worthy Contributor
  • Post published:July 14, 2015
  • Post category:CVID/Rare Disease

Blogger Zebra’s Child, who has common variable immune deficiency, recently posted about the struggle she finds staring herself in the face first thing in the morning. While looking in the…

Continue Reading A Dog on the Leash is Worth a Half Hour on the Couch
How to Answer the Top 5 Questions about PID

How to Answer the Top 5 Questions about PID

  • Post author:Patient Worthy Contributor
  • Post published:July 14, 2015
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

Sometimes we want things to be explained to us in a way we can relate to. Mother of two and Common Variable Immune Deficiency (CVID) Blogger on "Through Accepting Limits"…

Continue Reading How to Answer the Top 5 Questions about PID
CVID Survivor Leaves Her Life in the Hands of Strangers

CVID Survivor Leaves Her Life in the Hands of Strangers

  • Post author:Patient Worthy Contributor
  • Post published:July 10, 2015
  • Post category:CVID/Rare Disease

Vanessa Garrett, a woman with Crohn’s disease, common variable immunodeficiency (CVID), and Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), is grateful for her life despite her circumstances. Her family is…

Continue Reading CVID Survivor Leaves Her Life in the Hands of Strangers

Breakthrough DNA Test Trades Your Privacy for Security

  • Post author:Patient Worthy Contributor
  • Post published:July 9, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

With seven billion people in the world, there's a lot that makes us different from one another-- wealth, geographic location, family, interests. But our common ground? The ultimate equalizer of…

Continue Reading Breakthrough DNA Test Trades Your Privacy for Security

Poll: Is it Time to Make Cures Our #1 Priority?

  • Post author:Patient Worthy Contributor
  • Post published:July 9, 2015
  • Post category:Rare Disease

The Congress backed 21st Century Cures Act will be making its way to the House or Representatives' desks this week. After receiving a 51-0 unanimous vote from the The House…

Continue Reading Poll: Is it Time to Make Cures Our #1 Priority?
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