Rare Disease – Page 261 – Patient Worthy

366 Talking Tips – Be on time

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

366 Talking Tips – You are in control

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

[Source: pixabay.com]

This is the Formidable Force Facing Down Behcet’s Disease

Post author:Ronald Ledsen
Post published:May 6, 2016
Post category:Behçet's Rare Disease

Sometimes, you just gotta be an unstoppable force... What do you do when you’ve been diagnosed with a disease like Behcet’s, something so rare that information and resources about it…

Editor’s Choice: 4 Awareness Months in 1, Rare Moms, Donald Trump and “This is Stupid”

Post author:Patient Worthy Contributor
Post published:May 6, 2016
Post category:Acromegaly Cushing Disease CVID Narcolepsy Rare Disease

Happy Almost Mother's Day Patient Worthians! This week is PACKED with announcements. First of all, it's Lyme disease Awareness Month, Cystinosis Awareness Month, Cystic Fibrosis Awareness Month, and Behcet's Awareness…

MEME – Keep the Fight Going

Post author:Patient Worthy Contributor
Post published:May 6, 2016
Post category:Rare Disease

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Do You Want to Be In the Know About BPD?

Post author:EmpatheticBadass
Post published:May 6, 2016
Post category:Bronchopulmonary Dysplasia Rare Disease Timely

Continuing medical education courses (or CMEs) are educational events designed to keep medical professionals up to date on the latest information in their fields. These professionals earn credits toward their ongoing…

Pixabay

Compassion is the Best Drug for the Body and the Soul

Post author:Patient Worthy Contributor
Post published:May 6, 2016
Post category:Myasthenia Gravis Rare Disease

There are treatments out there to help manage living with Myasthenia Gravis (MG). Whether your infant was born with Congential Myasthenia Gravis or you are an adult who showed a positive result…

Why Mother’s Day is a Great Day for Reflection

Post author:Patient Worthy Contributor
Post published:May 6, 2016
Post category:CAPS POTS Rare Disease

I am a Rare Mom! I love that term, because it covers so many different parts of my life. I’m unique, an individual, a working mom, and I’m also a…

Rare Disease Meme – Rise Up

Post author:Patient Worthy Contributor
Post published:May 6, 2016
Post category:Rare Disease

Free-Photos / Pixabay

¿Vas a correr, Eh? Canadienses corren por una buena causa

Post author:Patient Worthy Contributor
Post published:May 6, 2016
Post category:Ankylosing Spondylitis Rare Disease

El 7 de junio de 2015, miles de personas salieron a las calles a través de Canadá en el Paseo anual para poner fin a la artritis. Una causa principal…

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Unwelcomed Advice After My Dystonia Diagnosis

Post author:Tom Seaman
Post published:May 5, 2016
Post category:Dystonia Rare Disease

Living with a chronic health condition that dramatically alters one’s life can be very confusing, scary, and lonely. I lived in this mental misery for years when I developed dystonia,…

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…

This Little Girl’s Medical Journey Will Hit You Right in the Feels Part 1

Post author:Rebekah
Post published:May 5, 2016
Post category:Rare Disease

This article is the first in a series written by Carolina, Mariana's mother. Carolina hopes that sharing their story will increase awareness. Ever since Mariana was born, her life has…

Harriett Tubman & Narcolepsy: A Sleeper in the $20 Bill Sweepstakes

Post author:Donald Blake
Post published:May 5, 2016
Post category:Narcolepsy Rare Disease

The steely visage of our seventh president Andrew Jackson will disappear from the face of the $20 bill. Yes, “Old Hickory” has been fired from top billing on the venerable $20 note…

Meet Rob: Acromegaly Video Series Part 1

Post author:Rebekah
Post published:May 5, 2016
Post category:Acromegaly Rare Disease

My name is Rob. I’m originally from Miami, Florida, born and raised, moved out of there back in 1981 and joined the Navy; spent 20 years on active duty. Transitioned to…

Source: Jeff Clements Photography (https://www.facebook.com/Jeff-Clements-Photography-138022931501/)

What is the Lyme Disease Challenge?

Post author:Patient Worthy Contributor
Post published:May 5, 2016
Post category:Lyme Disease Rare Disease

As you know, May is Lyme Disease Awareness Month and we encourage you to participate! One of my favorite ways to get involved is doing the Lyme Disease Challenge. I took…

Ambas caras de la moneda: El doctor también es el Paciente

Post author:Patient Worthy Contributor
Post published:May 5, 2016
Post category:CVID Rare Disease

Psiquiatra Dr. Jennifer Pate, de 47 años, recibe infusiones intravenosas de inmunoglobulina que salvan vidas cada tres semanas. Esto no es por elección, porque sin ellos, su sistema inmunológico está…

Legs by Liz… Trust Us It Burns!

Post author:Patient Worthy Contributor
Post published:May 4, 2016
Post category:Cushing Disease Rare Disease

Nutrition and exercise are vital to better health and wellness. Still, getting back into the gym with a rare disease is tough. Staying fit and working out can be so challenging post…

Video Series: Kathryn On Being a Rare Mom

Post author:Patient Worthy Contributor
Post published:May 4, 2016
Post category:Rare Disease

When you’re a rare mom your diagnosis isn’t always figured out and so in between trying to raise your children, you’re going to doctors and medical centers and trying to…

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Why Checking For Ticks Is The Most Important Thing You Need To Do This Summer

Post author:Erica Zahn
Post published:May 4, 2016
Post category:Lyme Disease Rare Disease

It's that time of year, again, folks. Yep, it's time to CHECK FOR TICKS! These tiny little predators can pack quite a wallop if you get hooked up with the…

The Best Thing You Can Do as a Rare Mom

Post author:Patient Worthy Contributor
Post published:May 4, 2016
Post category:Myasthenia Gravis Rare Disease

I am a rare mom. For those that don’t know what that means, rare moms are the silent heroes of the world parenting to the best of their abilities with…

Rare Mom: The Other Shoe

Post author:Patient Worthy Contributor
Post published:May 4, 2016
Post category:Rare Disease

I am the mom to a 12 year old with Albrights Hereditary Osteodystrophy, AHO. According to the Genetic and Rare Disease Center, GARD, AHO is a rare metabolic syndrome created…

I Wish I Could Take a Vacation From My Body: A Day in the Life of a Lymie

Post author:Patient Worthy Contributor
Post published:May 4, 2016
Post category:Lyme Disease Rare Disease

Have you ever been worked by your job so hard that you think "I need a vacation!"? I know I have. Have you ever been worked so hard by your…

Desde la perspectiva de un fan de los Falcons, lo que es vivir con ICV …

Post author:Patient Worthy Contributor
Post published:May 4, 2016
Post category:CVID Rare Disease

¿Te has preguntado qué se siente tener la Enfermedad de Inmunodeficiencia Común Variable (ICV)? Este video explora la vida del día a día desde el punto de vista de Keith…

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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…

366 Talking Tips – Be on time

366 Talking Tips – You are in control

This is the Formidable Force Facing Down Behcet’s Disease

Editor’s Choice: 4 Awareness Months in 1, Rare Moms, Donald Trump and “This is Stupid”

MEME – Keep the Fight Going

Do You Want to Be In the Know About BPD?

Compassion is the Best Drug for the Body and the Soul

Why Mother’s Day is a Great Day for Reflection

Rare Disease Meme – Rise Up

¿Vas a correr, Eh? Canadienses corren por una buena causa

Unwelcomed Advice After My Dystonia Diagnosis

Parkinson’s Disease: What Saved Michael J. Fox

This Little Girl’s Medical Journey Will Hit You Right in the Feels Part 1

Harriett Tubman & Narcolepsy: A Sleeper in the $20 Bill Sweepstakes

Meet Rob: Acromegaly Video Series Part 1

What is the Lyme Disease Challenge?

Ambas caras de la moneda: El doctor también es el Paciente

Legs by Liz… Trust Us It Burns!

Video Series: Kathryn On Being a Rare Mom

Why Checking For Ticks Is The Most Important Thing You Need To Do This Summer

The Best Thing You Can Do as a Rare Mom

Rare Mom: The Other Shoe

I Wish I Could Take a Vacation From My Body: A Day in the Life of a Lymie

Desde la perspectiva de un fan de los Falcons, lo que es vivir con ICV …

Still Floating Like a Butterfly: Muhammad Ali

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