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Author: PW Blogger

This author has written 124 articles
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How Her Destiny With Eisenmenger’s Hole Led To The Pole

How Her Destiny With Eisenmenger’s Hole Led To The Pole

  • Post author:PW Blogger
  • Post published:May 23, 2016
  • Post category:Eisenmenger syndrome/Rare Disease

At 17, she suffered excruciating chest pain, then collapsed. That is when Tess Dunn got the explanation that she had a hole in her heart. Born in the Philippines, Tess was…

Continue Reading How Her Destiny With Eisenmenger’s Hole Led To The Pole
Do You Have Determination Like This Gymnast with Cushing?
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Do You Have Determination Like This Gymnast with Cushing?

  • Post author:PW Blogger
  • Post published:May 23, 2016
  • Post category:Cushing Disease

A gymnast must be in top form to participate in competitions. As reported by the Amery Free Press, when Elli Meagher began to have problems with muscle weakness, weight gain, and…

Continue Reading Do You Have Determination Like This Gymnast with Cushing?
40 Years and an Aneurysm… Then Finally an EDS Diagnosis
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40 Years and an Aneurysm… Then Finally an EDS Diagnosis

  • Post author:PW Blogger
  • Post published:May 23, 2016
  • Post category:Ehlers-Danlos Syndrome/Rare Disease

Global Genes tells us that Bonnie Wheeler spent the first 40 years of her life enduring the symptoms of undiagnosed Ehlers-Danlos syndrome, which is a grouping of connective tissue disorders.…

Continue Reading 40 Years and an Aneurysm… Then Finally an EDS Diagnosis
His New Nickname is “Death to Pitched Things”

His New Nickname is “Death to Pitched Things”

  • Post author:PW Blogger
  • Post published:May 18, 2016
  • Post category:Ankylosing Spondylitis

With baseball season upon us, we wanted to check in on our Ankylosing Spondylitis (AS) celebrity baseball player Franklin Guitierrez, who turned misfortune into a learning opportunity, and rises like the…

Continue Reading His New Nickname is “Death to Pitched Things”
5 Things You Didn’t Know About Familial Hypercholesterolemia
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5 Things You Didn’t Know About Familial Hypercholesterolemia

  • Post author:PW Blogger
  • Post published:May 13, 2016
  • Post category:Familial Hypercholesterolemia/Rare Disease

1. It’s Genetic A hereditary condition, familial hypercholesterolemia (FH) affects roughly 1 in 500 people around the world, according to the National Institutes of Health. Because the disorder is present…

Continue Reading 5 Things You Didn’t Know About Familial Hypercholesterolemia
Cystinosis Leave You Strapped for Cash?
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Cystinosis Leave You Strapped for Cash?

  • Post author:PW Blogger
  • Post published:May 6, 2016
  • Post category:Cystinosis

Strapped for cash after a cystinosis diagnosis? Listen to this! There is a scholarship available to lighten the load of families who are dealing with the challenges that accompany cystinosis.…

Continue Reading Cystinosis Leave You Strapped for Cash?
Ankylosing Spondylitis: Living Like a Rock Star
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Ankylosing Spondylitis: Living Like a Rock Star

  • Post author:PW Blogger
  • Post published:May 5, 2016
  • Post category:Ankylosing Spondylitis

Ankylosing spondylitis is a rare, autoimmune disorder. It is a chronic form of inflammatory arthritis that primarily affects the base of the spine, bones and joints. It has also been referred…

Continue Reading Ankylosing Spondylitis: Living Like a Rock Star
Parkinson’s Disease: What Saved Michael J. Fox

Parkinson’s Disease: What Saved Michael J. Fox

  • Post author:PW Blogger
  • Post published:May 5, 2016
  • Post category:Parkinson's Disease/Rare Disease

Michael J. Fox was the known for years as the teenage financial wizard on the television series, Family Ties. Later he went on to become a time traveling teen in…

Continue Reading Parkinson’s Disease: What Saved Michael J. Fox
Still Floating Like a Butterfly: Muhammad Ali
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Still Floating Like a Butterfly: Muhammad Ali

  • Post author:PW Blogger
  • Post published:May 3, 2016
  • Post category:Parkinson's Disease/Rare Disease

Muhammad Ali is known for many things, including being the Heavyweight Boxing Champion of the World, the Rumble in the Jungle and his fight against the Vietnam War. Diagnosed with…

Continue Reading Still Floating Like a Butterfly: Muhammad Ali
Here’s Why You Can’t Destroy Kylie Jenner for Wheelchair Photos

Here’s Why You Can’t Destroy Kylie Jenner for Wheelchair Photos

  • Post author:PW Blogger
  • Post published:December 7, 2015
  • Post category:Complex Regional Pain Syndrome/Rare Disease

Ignorance - Lack of knowledge, learning, information. Careless - Having no concern or care, not paying attention. When trying to find the perfect words to describe the youngest Jenner's latest…

Continue Reading Here’s Why You Can’t Destroy Kylie Jenner for Wheelchair Photos
A NOMID Drug Changed This Little Girl’s Life

A NOMID Drug Changed This Little Girl’s Life

  • Post author:PW Blogger
  • Post published:November 30, 2015
  • Post category:CAPS/Neonatal onset multisystem inflammatory disease/Rare Disease

Say it with me: "NOH-mid" (or if you prefer, Neonatal-Onset Multisystem Inflammatory Disease...) "NOMID...is a rare disease that is often fatal. This video tells the story of Kayla Martínez, who was…

Continue Reading A NOMID Drug Changed This Little Girl’s Life
You May Be At Risk for Co-Morbidity, What You Need to Know

You May Be At Risk for Co-Morbidity, What You Need to Know

  • Post author:PW Blogger
  • Post published:November 6, 2015
  • Post category:Complex Regional Pain Syndrome/Rare Disease

As reported by the Pain News Network, when someone suffers from chronic pain, chances are he or she might have more than one ongoing disease or condition. This is called…

Continue Reading You May Be At Risk for Co-Morbidity, What You Need to Know
What This Girl Does to Support Her Dad Will Leave You Heartbroken

What This Girl Does to Support Her Dad Will Leave You Heartbroken

  • Post author:PW Blogger
  • Post published:November 6, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

If you've ever been a caregiver for someone living with a chronic or life-threatening condition, then no doubt you've had to wonder what's waiting around the next corner. That question of "What…

Continue Reading What This Girl Does to Support Her Dad Will Leave You Heartbroken
Meme Monday: Monday Motivation and Some Laughs for CAPS Families

Meme Monday: Monday Motivation and Some Laughs for CAPS Families

  • Post author:PW Blogger
  • Post published:November 2, 2015
  • Post category:CAPS/FCAS/Neonatal onset multisystem inflammatory disease

During the Holiday Season, we take time every year to express what we are thankful for. Usually this includes, friends, family, food on our tables, and a roof over our…

Continue Reading Meme Monday: Monday Motivation and Some Laughs for CAPS Families
When Unexplained Severe Swelling Comes Calling, This Is the Place For You!

When Unexplained Severe Swelling Comes Calling, This Is the Place For You!

  • Post author:PW Blogger
  • Post published:November 2, 2015
  • Post category:HAE/Rare Disease

Domingo didn’t want to go to yet another doctor. He’d had it. They never believed him when he described his weird and extremely painful swelling episodes. When he was a…

Continue Reading When Unexplained Severe Swelling Comes Calling, This Is the Place For You!

Esta enfermedad engañosa está engañando a doctores y matando a pacientes

  • Post author:PW Blogger
  • Post published:October 28, 2015
  • Post category:GLUT1 DS/Rare Disease

Los ves por todas partes – A pesar de que se ven totalmente fuera de lugar en el súper mercado o en el cine, o –pero aun- bailando en el…

Continue Reading Esta enfermedad engañosa está engañando a doctores y matando a pacientes
Esto es lo que ocurre cuando los pasajeros de una aerolínea huelen un pañal sucio

Esto es lo que ocurre cuando los pasajeros de una aerolínea huelen un pañal sucio

  • Post author:PW Blogger
  • Post published:October 28, 2015
  • Post category:Dystonia/Rare Disease

Nos ha ocurrido a todos. Es un viernes por la tarde. Estas en el aeropuerto, ansiosamente esperando cerca de la puerta de abordo para el próximo vuelo. Han pasado demasiados…

Continue Reading Esto es lo que ocurre cuando los pasajeros de una aerolínea huelen un pañal sucio
What These Twin Girls with PI Have Done Will Blow Your Mind

What These Twin Girls with PI Have Done Will Blow Your Mind

  • Post author:PW Blogger
  • Post published:October 28, 2015
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

Amanda and Emily Gale are twin sisters who have never let primary immunodeficiency diseases (PI) stop them from achieving at the highest levels--literally. As reported on the Immune Deficiency Foundation's…

Continue Reading What These Twin Girls with PI Have Done Will Blow Your Mind

Esta mama te hara querer darle una abrazo a todos los profesores

  • Post author:PW Blogger
  • Post published:October 27, 2015
  • Post category:Rare Disease

Los ves por todas partes – A pesar de que se ven totalmente fuera de lugar en el súper mercado o en el cine, o –pero aun- bailando en el…

Continue Reading Esta mama te hara querer darle una abrazo a todos los profesores
Meme Monday: What Halloween Monster is Causing Your Rare Disease?

Meme Monday: What Halloween Monster is Causing Your Rare Disease?

  • Post author:PW Blogger
  • Post published:October 26, 2015
  • Post category:CAPS/CVID/Dystonia/FCAS/Tyrosinemia

Meme Monday has been taken over by some of the most treacherous monsters of Halloween and Hollywood lore. All week we are profiling each monster that has tied us all…

Continue Reading Meme Monday: What Halloween Monster is Causing Your Rare Disease?
Marty and the White House Tell Us What #BacktoFutureDay is Really About

Marty and the White House Tell Us What #BacktoFutureDay is Really About

  • Post author:PW Blogger
  • Post published:October 21, 2015
  • Post category:Rare Disease

In recognition of Back to the Future day, the exact date that Marty Mcfly traveled to in 1985,  The Micheal J. Fox Foundation and the White House are encouraging speculation…

Continue Reading Marty and the White House Tell Us What #BacktoFutureDay is Really About
Do or Don’t: 5 Powerful Signs You Need To Break Up With Your Doctor

Do or Don’t: 5 Powerful Signs You Need To Break Up With Your Doctor

  • Post author:PW Blogger
  • Post published:September 25, 2015
  • Post category:Rare Disease

Just like breaking up with your significant other can be hard to do, so can breaking up with your doctor. After all, he or she may have been with you…

Continue Reading Do or Don’t: 5 Powerful Signs You Need To Break Up With Your Doctor

How To Improve Ankylosing Spondylitis Comfort in 3 Steps

  • Post author:PW Blogger
  • Post published:July 6, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Honestly, who doesn’t love lists? And lists about how to better manage Ankylosing Spondylitis? Even better. So luckily for us, Everyday Health showcases tons of lists about managing life with AS,…

Continue Reading How To Improve Ankylosing Spondylitis Comfort in 3 Steps

10 Shocking Things Cheaper Than Your HAE Drugs

  • Post author:PW Blogger
  • Post published:June 8, 2015
  • Post category:HAE/Rare Disease

In a recent study published by Prime Therapeutics, the company reported that the annual cost of treatment to an HAE patient is over $300,000. We wanted to illustrate the ridiculous…

Continue Reading 10 Shocking Things Cheaper Than Your HAE Drugs
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