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Rare Disease

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Why Skepticism is Key to Excellent Parenting

Why Skepticism is Key to Excellent Parenting

  • Post author:Patient Worthy Contributor
  • Post published:September 11, 2015
  • Post category:GLUT1 DS/Rare Disease

Sometimes a bit of skepticism is a good thing. RareConnect.org reports this was definitely true for Tina and Fernando when their sweet little boy, Nico, was diagnosed with epilepsy. At…

Continue Reading Why Skepticism is Key to Excellent Parenting
Spotlight on Family’s Informative Journey to GLUT1 DS

Spotlight on Family’s Informative Journey to GLUT1 DS

  • Post author:Patient Worthy Contributor
  • Post published:September 10, 2015
  • Post category:GLUT1 DS/Rare Disease

Epilepsy. Doose Syndrome. Lennox-Gastaut. While no parent expects to hear those words, he or she is even less raedy to learn that those words are wrong. RareConnect.org describes when Macie was only…

Continue Reading Spotlight on Family’s Informative Journey to GLUT1 DS
See What This Remarkable Mom Dared to Do for Her Son’s Food

See What This Remarkable Mom Dared to Do for Her Son’s Food

  • Post author:Patient Worthy Contributor
  • Post published:September 10, 2015
  • Post category:Rare Disease/Tyrosinemia

If I gave you 10 bucks right now, what would you do with it? Buy a ticket to a movie matinee, maybe, or pick up that new paperback you've been dying…

Continue Reading See What This Remarkable Mom Dared to Do for Her Son’s Food
Is Ankylosing Spondylitis to Blame for Legendary Band’s End?

Is Ankylosing Spondylitis to Blame for Legendary Band’s End?

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

Heavy metal band, Motley Crue, has been headlining shows since 1981, and for many of those years, Mick Mars, has been the guitar staple. His blistering leads and spot-on tonality…

Continue Reading Is Ankylosing Spondylitis to Blame for Legendary Band’s End?
5 Ways Your Butt Can Save a Life

5 Ways Your Butt Can Save a Life

  • Post author:Patient Worthy Contributor
  • Post published:September 9, 2015
  • Post category:CGD/Primary Immunodeficiencies/Rare Disease

Denim is a lot of things—it’s versatile, it’s comfortable, and with the right cut, it’s great for your butt. But is denim really life-changing? Thanks to Jeans for Genes Day,…

Continue Reading 5 Ways Your Butt Can Save a Life
This Kid Firefighter Will Make You Smile All Week

This Kid Firefighter Will Make You Smile All Week

  • Post author:Patient Worthy Contributor
  • Post published:September 9, 2015
  • Post category:Rare Disease/Tyrosinemia

The Schriever Air Force Base tells the story of Caden Rose, an 18 month year-old diagnosed with a very rare genetic disorder called tyrosinemia type 1. The disorder makes the body unable…

Continue Reading This Kid Firefighter Will Make You Smile All Week
Is This Smart Pill Too Good to Be True?

Is This Smart Pill Too Good to Be True?

  • Post author:Patient Worthy Contributor
  • Post published:September 8, 2015
  • Post category:Narcolepsy/Rare Disease

If someone offered you a pill that could make you temporarily smarter, would you take it? Well sure, why not? Even if it was just long enough to pass that…

Continue Reading Is This Smart Pill Too Good to Be True?
Superheroes Totally Make this Sick Little Boy’s Day

Superheroes Totally Make this Sick Little Boy’s Day

  • Post author:Patient Worthy Contributor
  • Post published:September 8, 2015
  • Post category:CVID/Rare Disease

Grab your mask and cape because superheroes are keeping the hope alive for Jonah Aregood, a nine-year-old Common Variable Immune Deficiency (CVID) patient. Hometownstations.com reports a local comic book store…

Continue Reading Superheroes Totally Make this Sick Little Boy’s Day
City Stunned By Horrific Accident. Is Narcolepsy To Blame?

City Stunned By Horrific Accident. Is Narcolepsy To Blame?

  • Post author:Patient Worthy Contributor
  • Post published:September 7, 2015
  • Post category:Narcolepsy/Rare Disease

A 3-year-old boy is dead. His 5-year-old sister was seriously injured. His mother had minor injuries. On a actually pleasant Saturday morning in Buffalo, NY,the Buffalo News reports a horrific accident occurred at…

Continue Reading City Stunned By Horrific Accident. Is Narcolepsy To Blame?
This Drummer’s Response to Dystonia is Worthy of a Solo

This Drummer’s Response to Dystonia is Worthy of a Solo

  • Post author:Patient Worthy Contributor
  • Post published:September 7, 2015
  • Post category:Dystonia/Rare Disease

Imagine you're a drummer in a popular band. Every time you sit down behind your drum kit, grab your sticks and queue up the music, the rhythm just flows out…

Continue Reading This Drummer’s Response to Dystonia is Worthy of a Solo
Editor’s Choice Weekend Roundup: 9-4-15

Editor’s Choice Weekend Roundup: 9-4-15

  • Post author:Patient Worthy Contributor
  • Post published:September 4, 2015
  • Post category:Rare Disease

Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] Allen’s Story, Part 2: A Soldier’s Last Hope Last time we left Allen he was…

Continue Reading Editor’s Choice Weekend Roundup: 9-4-15

This Incredible Use for Radon Will Blow Your Mind

  • Post author:Patient Worthy Contributor
  • Post published:September 4, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Think Radon is just a dangerous gas? Think again. For thousands of years, cultures all over the world have been using hot springs to heal all sorts of ailments. Perhaps…

Continue Reading This Incredible Use for Radon Will Blow Your Mind
This Girl’s Remarkable Story Is Sure To Inspire You

This Girl’s Remarkable Story Is Sure To Inspire You

  • Post author:Patient Worthy Contributor
  • Post published:September 4, 2015
  • Post category:GLUT1 DS/Rare Disease

This Michelle Tanner look-alike (she even knows the signature "you got it, dude!") is one of the brave faces of GLUT1 DS. RareConnect.org describes Gracie as a bubbly, strong willed three…

Continue Reading This Girl’s Remarkable Story Is Sure To Inspire You
#DystoniaAwareness Guest Blogger Pamela: Life Before Dystonia

#DystoniaAwareness Guest Blogger Pamela: Life Before Dystonia

  • Post author:Patient Worthy Contributor
  • Post published:September 3, 2015
  • Post category:Dystonia/Rare Disease

As we join in the #DystoniaAwareness movement to make September the official month to support the Dystonia community, we will be posting blog posts from the Dystonia Muse herself, Pamela…

Continue Reading #DystoniaAwareness Guest Blogger Pamela: Life Before Dystonia
It’s Dystonia Awareness Month, So Grab a Bike Like This Dude

It’s Dystonia Awareness Month, So Grab a Bike Like This Dude

  • Post author:James Stone
  • Post published:September 3, 2015
  • Post category:Dystonia/Rare Disease

When Dystonia has got you down, just ride on. The UK site, DorsetEcho, reports that's Andrew Beale’s approach. Beale will cycle 33 miles through the streets of the United Kingdom…

Continue Reading It’s Dystonia Awareness Month, So Grab a Bike Like This Dude
All Dystonia Patients Win When This Country’s Civil War Ends

All Dystonia Patients Win When This Country’s Civil War Ends

  • Post author:Patient Worthy Contributor
  • Post published:September 3, 2015
  • Post category:Dystonia/Rare Disease

Imagine you live in New York City and a procedure that could save your life could only be conducted in Los Angeles. Well rationally you would just take a plane…

Continue Reading All Dystonia Patients Win When This Country’s Civil War Ends
¿¡Qué!? ¿Patient Worthy is Introducing Posts en Español?

¿¡Qué!? ¿Patient Worthy is Introducing Posts en Español?

  • Post author:Patient Worthy Contributor
  • Post published:September 2, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

We have some great news! Patient Worthy is learning to speak Spanish! I mean 37 million people in America do, so it's time for us to as well. The heart…

Continue Reading ¿¡Qué!? ¿Patient Worthy is Introducing Posts en Español?
This Boy Went to the Internet for Help, the Response Shocked Him

This Boy Went to the Internet for Help, the Response Shocked Him

  • Post author:Patient Worthy Contributor
  • Post published:September 2, 2015
  • Post category:GLUT1 DS/Rare Disease

Writing on the Internet can feel a lot like screaming into the void. You never know who can hear you or who even cares. But with the rare disease community…

Continue Reading This Boy Went to the Internet for Help, the Response Shocked Him
This Is How You Respond To Your Child’s Chronic Illness

This Is How You Respond To Your Child’s Chronic Illness

  • Post author:Patient Worthy Contributor
  • Post published:September 2, 2015
  • Post category:Dystonia/Rare Disease

Tyler Staab was like any other seven-year-old boy—energetic, rowdy, and super interested in sports and playing outside. But in February, 2005 his whole world changed, and that of his parents.…

Continue Reading This Is How You Respond To Your Child’s Chronic Illness
This Mom Makes Us Want to Empty Our Wallets to Help

This Mom Makes Us Want to Empty Our Wallets to Help

  • Post author:Rebekah
  • Post published:September 1, 2015
  • Post category:Rare Disease

Kimberly was diagnosed with chronic, late stage Lyme disease just this June, after suffering for over a decade. By the time it was finally discovered she had three co-infections and…

Continue Reading This Mom Makes Us Want to Empty Our Wallets to Help
Join Us To Make September Dystonia Awareness Month!

Join Us To Make September Dystonia Awareness Month!

  • Post author:Patient Worthy Contributor
  • Post published:September 1, 2015
  • Post category:Dystonia/Rare Disease

Did you know September is Dystonia Awareness month! It's in the process of becoming nationally recognized, all it needs is your signature! Sign the petition, visit Dystoniaaware.org, or watch their video…

Continue Reading Join Us To Make September Dystonia Awareness Month!
This Is How a Heroic Mom Saves Her Son With Butter

This Is How a Heroic Mom Saves Her Son With Butter

  • Post author:Patient Worthy Contributor
  • Post published:August 31, 2015
  • Post category:GLUT1 DS/Rare Disease

Caring for a child diagnosed with a rare chronic condition is no small feat for anyone, but this Mom, Rebecca Martin, is definitely rising to the challenge. In her blog,…

Continue Reading This Is How a Heroic Mom Saves Her Son With Butter
Patient Worthy Introduces Meme Monday!

Patient Worthy Introduces Meme Monday!

  • Post author:Rebekah
  • Post published:August 31, 2015
  • Post category:Rare Disease

Here at Patient Worthy, we love to share the news. The ability to keep you up-to-date on the latest and greatest about different rare diseases is the heart behind our…

Continue Reading Patient Worthy Introduces Meme Monday!

Allen’s Story, Part 2: A Soldier’s Last Hope

  • Post author:Patient Worthy Contributor
  • Post published:August 30, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

  We last left Allen's story where this brave soldier had to leave the service due to the immense pain caused by a mystery condition. To get caught up on…

Continue Reading Allen’s Story, Part 2: A Soldier’s Last Hope
Forget Sharks, This Surfer Had to Overcome So Much More

Forget Sharks, This Surfer Had to Overcome So Much More

  • Post author:Patient Worthy Contributor
  • Post published:August 28, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Surfers are known for their "hang-loose" no worry attitudes. But one thing that most people tend to overlook is their relentless spirit and the will to overcome all odds. Meet…

Continue Reading Forget Sharks, This Surfer Had to Overcome So Much More
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