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Yearly Archives: 2016

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  2. 2016>
  3. Page 5
Trigeminal Neuralgia: This is Your Worst Nightmare
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Trigeminal Neuralgia: This is Your Worst Nightmare

  • Post author:Alisha Stone
  • Post published:December 9, 2016
  • Post category:Rare Disease/Trigeminal Neuralgia (Tic Douloureux)

So, it’s Friday afternoon, and you’re at work in a crammed meeting room. You’re looking forward to dinner with some friends. Only two more hours to go. All you’ve gotta…

Continue Reading Trigeminal Neuralgia: This is Your Worst Nightmare
NOTA Rises to the Tyrosinemia Challenge and Many are Grateful
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NOTA Rises to the Tyrosinemia Challenge and Many are Grateful

  • Post author:Chloe Easterbrook
  • Post published:December 9, 2016
  • Post category:Rare Disease/Tyrosinemia

Tyrosinemia is a hereditary disease that causes a disruption in the body's ability to break down tyrosine, an amino acid. The liver lacks the correct enzyme and, as a result, it…

Continue Reading NOTA Rises to the Tyrosinemia Challenge and Many are Grateful
What Wikipedia Can’t Tell You About JMG and Comfort
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What Wikipedia Can’t Tell You About JMG and Comfort

  • Post author:Sabina Kennedy
  • Post published:December 9, 2016
  • Post category:Myasthenia Gravis/Rare Disease

Linus from the "Peanuts" comic strip is infamous for carrying around his security blanket while sucking his thumb. It is this same idea of a comfort object that has soothed…

Continue Reading What Wikipedia Can’t Tell You About JMG and Comfort
The Best Way Chutzpah Changes RSD/ CRPS
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The Best Way Chutzpah Changes RSD/ CRPS

  • Post author:Sabina Kennedy
  • Post published:December 9, 2016
  • Post category:Complex Regional Pain Syndrome/Rare Disease

Inspiration is important because it provides us with a glimpse of the fact that we can be great. But inspiration is not what fuels change, inspiration is fleeting. It’s what…

Continue Reading The Best Way Chutzpah Changes RSD/ CRPS
Estos chicos ricos son los Robin Hood del ahorro

Estos chicos ricos son los Robin Hood del ahorro

  • Post author:Patient Worthy Contributor
  • Post published:December 9, 2016
  • Post category:Cystic Fibrosis/Primary Immunodeficiencies/Rare Disease

Vamos a volar su mente durante un minuto. Hay aproximadamente 7.000 diferentes tipos de enfermedades raras, y más se descubren todos los días. De acuerdo con genes globales, hay 30…

Continue Reading Estos chicos ricos son los Robin Hood del ahorro
Clinical Trials Have Consequences and Not Just for Kallmann Syndrome
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Clinical Trials Have Consequences and Not Just for Kallmann Syndrome

  • Post author:Erica Zahn
  • Post published:December 8, 2016
  • Post category:Kallmann syndrome/Rare Disease

I vividly remember being four years old and going to the doctor with my mother and sister for a very important event: my sister and I were getting two vaccinations.…

Continue Reading Clinical Trials Have Consequences and Not Just for Kallmann Syndrome
The Narcolepsy Article of Your Dreams
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The Narcolepsy Article of Your Dreams

  • Post author:Sabina Kennedy
  • Post published:December 8, 2016
  • Post category:Narcolepsy/Rare Disease

Some people would give anything to be able to get take a nap or just fall sleep whenever they wanted too. But that is not the case for someone who…

Continue Reading The Narcolepsy Article of Your Dreams
Why The Facial Pain Association is the Knight for TN
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Why The Facial Pain Association is the Knight for TN

  • Post author:Farrah Fontaine
  • Post published:December 8, 2016
  • Post category:Rare Disease/Timely/Trigeminal Neuralgia (Tic Douloureux)

Are you a person living with trigeminal neuralgia (TN)? Are you aware of the Facial Pain Association (FPA)? Well, you should be. This organization is incredible!! Focused on people with TN, this…

Continue Reading Why The Facial Pain Association is the Knight for TN
How One Courageous Woman with NMO Inspired Me
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How One Courageous Woman with NMO Inspired Me

  • Post author:Alisha Stone
  • Post published:December 8, 2016
  • Post category:Devic's Syndrome (Neuromyelitis Optica)/Rare Disease

In the midst of an ugly American presidential post-election, I am actively looking for inspiration to distract me from this mess. And man, was I lucky! There’s a gal who’s living…

Continue Reading How One Courageous Woman with NMO Inspired Me
Whee! These are Exciting Times for FH!
[Source: pixabay.com]

Whee! These are Exciting Times for FH!

  • Post author:PW Blogger
  • Post published:December 8, 2016
  • Post category:Familial Hypercholesterolemia

Although people living with familial hypercholesterolemia (FH) continue to work for increased awareness about this disease, it is an exciting time for those who are living with it. According to…

Continue Reading Whee! These are Exciting Times for FH!
Vas a hacer tu danza feliz cuando leas acerca de este niño!
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Vas a hacer tu danza feliz cuando leas acerca de este niño!

  • Post author:Patient Worthy Contributor
  • Post published:December 8, 2016
  • Post category:Cystic Fibrosis/Rare Disease

Alguna vez has tenido uno de esos días en los que no se sentía muy entusiasmado acerca de su vida? Tú sabes de qué estoy hablando. Los blues de ho-hum.…

Continue Reading Vas a hacer tu danza feliz cuando leas acerca de este niño!
How Change Makes Tyrosinemia Better
[Source:: pixabay.com]

How Change Makes Tyrosinemia Better

  • Post author:Sabina Kennedy
  • Post published:December 7, 2016
  • Post category:Rare Disease/Tyrosinemia

Mahatma Gandhi taught that we should endeavor to be the change that we wish to see in the world. (I believe Gandhi may have been on to something). I'm wondering…

Continue Reading How Change Makes Tyrosinemia Better
21st Century Cures Act Passes Senate!

21st Century Cures Act Passes Senate!

  • Post author:Patient Worthy Contributor
  • Post published:December 7, 2016
  • Post category:Rare Disease

The 21st Century Cures Act passed in the House last week but supporters have been waiting with bated breath for the verdict from the Senate. Today, it passed. In fact,…

Continue Reading 21st Century Cures Act Passes Senate!
How Support Helps You Stay Popular in the POTS World
[Source: pixabay.com]

How Support Helps You Stay Popular in the POTS World

  • Post author:Sabina Kennedy
  • Post published:December 7, 2016
  • Post category:POTS/Rare Disease

We all need to be able to turn to family and friends when we've got a problem. There is a strong link between the support we receive and our well-being. It…

Continue Reading How Support Helps You Stay Popular in the POTS World
The Cystic Fibrosis Taboo You Should Break
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The Cystic Fibrosis Taboo You Should Break

  • Post author:Sabina Kennedy
  • Post published:December 7, 2016
  • Post category:Cystic Fibrosis/Rare Disease

When faced with the unexpected, we often are overwhelmed with fear about of what lies ahead. If you or a loved one have dealt with a devastating medical diagnosis, many…

Continue Reading The Cystic Fibrosis Taboo You Should Break
What Do You Know About Diet and IPF?
Source: Pexels.com

What Do You Know About Diet and IPF?

  • Post author:EmpatheticBadass
  • Post published:December 7, 2016
  • Post category:Idiopathic Pulmonary Fibrosis/IPF/Rare Disease

When your body has to work extra hard to breathe because of lung issues such as idiopathic pulmonary fibrosis (IPF), help it out by “eating healthy.” Digesting big, heavy meals…

Continue Reading What Do You Know About Diet and IPF?
Join This MS Mom at Athleta to Benefit The National MS Society

Join This MS Mom at Athleta to Benefit The National MS Society

  • Post author:Patient Worthy Contributor
  • Post published:December 7, 2016
  • Post category:Multiple Sclerosis

Need to do some Christmas or Holiday shopping? Today, PW Contributor and super mom with MS Angie Randall is hosting an event, in-store at Athleta in Chicago, IL AND online.…

Continue Reading Join This MS Mom at Athleta to Benefit The National MS Society
Ni lo pienses Cupido

Ni lo pienses Cupido

  • Post author:Patient Worthy Contributor
  • Post published:December 7, 2016
  • Post category:Rare Disease

He estado usando los sitios de citas por Internet durante los últimos once años. También he estado tratando con una enfermedad rara y sin diagnosticar durante los últimos cinco años…

Continue Reading Ni lo pienses Cupido
Take a Minute to Change a Life

Take a Minute to Change a Life

  • Post author:Kathy Devanny
  • Post published:December 6, 2016
  • Post category:Gastroschisis/Rare Disease/Timely

Baby Isabella (pictured above) is in serious need of a hospital transfer. Her condition Gastroschisis, is rare. She needs a facility with people who have the most experience caring for…

Continue Reading Take a Minute to Change a Life
One Cute Story and Some Important Juvenile Idiopathic Arthritis Facts
Source: Pexels.com

One Cute Story and Some Important Juvenile Idiopathic Arthritis Facts

  • Post author:Erica Zahn
  • Post published:December 6, 2016
  • Post category:Juvenile idiopathic arthritis/Rare Disease

I used to work with a woman who had a houseful of kids, so she always had an interesting story to tell. One story that stands out to me is…

Continue Reading One Cute Story and Some Important Juvenile Idiopathic Arthritis Facts
Cystic Fibrosis Met Its Match with a Woman on Facebook
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Cystic Fibrosis Met Its Match with a Woman on Facebook

  • Post author:PW Blogger
  • Post published:December 6, 2016
  • Post category:Cystic Fibrosis/Rare Disease

How many of us are guilty of spending countless hours just scrolling through Facebook? I know I'm guilty of that. Just checking out pictures and watching videos. It's great to see…

Continue Reading Cystic Fibrosis Met Its Match with a Woman on Facebook
The Simplest Way to Make the Best of NASH
Source: www.pixabay.com

The Simplest Way to Make the Best of NASH

  • Post author:Sabina Kennedy
  • Post published:December 6, 2016
  • Post category:Nonalcoholic steatohepatitis/Rare Disease

Lately, I haven’t been particularly mindful of hope. In truth, sometimes I feel like it’s more suited to children’s fairy tales. But the more I’ve turned the issue around in…

Continue Reading The Simplest Way to Make the Best of NASH
Massachusetts Declares a War on Lyme
[Source: pixabay.com]

Massachusetts Declares a War on Lyme

  • Post author:Erica Zahn
  • Post published:December 6, 2016
  • Post category:Lyme Disease

Growing up in the New York City area, the fear of ticks was drummed into me. The tiny little buggers could hitchhike home with us tucked in the waistband of…

Continue Reading Massachusetts Declares a War on Lyme
11 doctores que deberias de visitar cuando tienes la enfermedad de Bechet’s
source: pixabay.com

11 doctores que deberias de visitar cuando tienes la enfermedad de Bechet’s

  • Post author:Patient Worthy Contributor
  • Post published:December 6, 2016
  • Post category:Behçet's/Rare Disease

Una de las partes frustrantes de tener la enfermedad de Behçet es que puede afectar a muchas partes diferentes del cuerpo. Y a diferencia de otras condiciones que sólo pueden…

Continue Reading 11 doctores que deberias de visitar cuando tienes la enfermedad de Bechet’s
Why You Have No Excuse Not to Join an EDS Foundation
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Why You Have No Excuse Not to Join an EDS Foundation

  • Post author:Farrah Fontaine
  • Post published:December 5, 2016
  • Post category:Ehlers-Danlos Syndrome/Rare Disease/Timely

If you have Ehlers-Danlos Syndrome (EDS), life can get a bit complicated. Between doctors not knowing what you have to trying to figure out what treatments to use, it can…

Continue Reading Why You Have No Excuse Not to Join an EDS Foundation
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