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Monthly Archives: November 2016

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Sarcoidosis Was No Laughing Matter for the Amazing Bernie Mac
Source: www.pixabay.com

Sarcoidosis Was No Laughing Matter for the Amazing Bernie Mac

  • Post author:Erica Zahn
  • Post published:November 7, 2016
  • Post category:Rare Disease/Sarcoidosis

Bernie Mac was one of my favorite comedians. He grew up on the south side of Chicago, financially poor but determined to rise above his tough beginnings. "I didn't have to…

Continue Reading Sarcoidosis Was No Laughing Matter for the Amazing Bernie Mac
Las mamás saben mejor (y los médicos necesitan escuchar)

Las mamás saben mejor (y los médicos necesitan escuchar)

  • Post author:Patient Worthy Contributor
  • Post published:November 7, 2016
  • Post category:Rare Disease/Tyrosinemia

De acuerdo, Dr.House: Tenemos padres por primera vez que afirman su recién nacido es "irritable, inquieto, vómitos explosivos, y se niega a comer." Aunque también decir que el niño tiene…

Continue Reading Las mamás saben mejor (y los médicos necesitan escuchar)
Esto es lo que necesita saber para estar informado sobre la sarcoidosis
Pexels / Pixabay

Esto es lo que necesita saber para estar informado sobre la sarcoidosis

  • Post author:Patient Worthy Contributor
  • Post published:November 6, 2016
  • Post category:Rare Disease/Sarcoidosis

Uno pensaría que en el mundo actual de la tecnología, estaríamos delante de la curva, especialmente cuando se refiere a las pruebas de diagnóstico / pronóstico. Lo que pasa descubrimiento…

Continue Reading Esto es lo que necesita saber para estar informado sobre la sarcoidosis
Cómo una ciudad de New Jersey está trayendo la artillería pesada para vencer Distonía

Cómo una ciudad de New Jersey está trayendo la artillería pesada para vencer Distonía

  • Post author:Patient Worthy Contributor
  • Post published:November 5, 2016
  • Post category:Dystonia/Rare Disease

En este momento, usted y yo estamos justo en el medio de uno de los más grandes de la historia las edades de información. Tenemos más formas de aprender sobre…

Continue Reading Cómo una ciudad de New Jersey está trayendo la artillería pesada para vencer Distonía
Editor’s Choice: Spoonie Love, Support Groups and Good News

Editor’s Choice: Spoonie Love, Support Groups and Good News

  • Post author:Patient Worthy Contributor
  • Post published:November 4, 2016
  • Post category:Behçet's/Complex Regional Pain Syndrome/Idiopathic Pulmonary Fibrosis/IPF/Rare Disease

Happy Weekend Before the Election Patient Worthians! Get some rest, Tuesday is going to be a big one in the United States. But while you're hanging out, check out these…

Continue Reading Editor’s Choice: Spoonie Love, Support Groups and Good News
An Amazingly Simple Solution for Better Cystinosis Care

An Amazingly Simple Solution for Better Cystinosis Care

  • Post author:Erica Zahn
  • Post published:November 4, 2016
  • Post category:Cystinosis/Rare Disease

Cystinosis is a metabolic disease in which the amino acid cystine crystallizes and then begins to accumulate in the kidneys, eyes, liver, and white blood cells. Children are typically diagnosed…

Continue Reading An Amazingly Simple Solution for Better Cystinosis Care
What You Need to Do in an Emergency When You Have AS
Source: flickr.com

What You Need to Do in an Emergency When You Have AS

  • Post author:Farrah Fontaine
  • Post published:November 4, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

In the case of an emergency, we're all taught to dial 911. We all assume that the police, firemen, or EMTs will be able to help us. But what if…

Continue Reading What You Need to Do in an Emergency When You Have AS
How are Schools Failing Their Children with Crohn’s?
Source: pixabay.com

How are Schools Failing Their Children with Crohn’s?

  • Post author:Sabina Kennedy
  • Post published:November 4, 2016
  • Post category:pediatric ulcerative colitis/Rare Disease

It’s about one month into school starting and the morning routine is starting to feel and look all too familiar. A family scramble, and my voice echoes the same commands…

Continue Reading How are Schools Failing Their Children with Crohn’s?
November MDS Foundation Patient and Family Forum

November MDS Foundation Patient and Family Forum

  • Post author:Patient Worthy Contributor
  • Post published:November 4, 2016
  • Post category:Myelodysplastic syndromes

MDS Patient & Family Forum Miami, Florida November 12, 2016 9:30 am - 2:30 pm This Free Event is sponsored by The MDS Foundation, Inc. Topics to be covered include: Therapies and Patient…

Continue Reading November MDS Foundation Patient and Family Forum
Revealing a Bleeding Disorder: Informative, Not Frightening
Source: pixabay.com

Revealing a Bleeding Disorder: Informative, Not Frightening

  • Post author:PW Blogger
  • Post published:November 4, 2016
  • Post category:Rare Disease/Von Willebrand's Disease

First of all, many people have experienced a nose bleed at some point. A nose bleed is a very common annoyance for many. These people typically just brush it off as something…

Continue Reading Revealing a Bleeding Disorder: Informative, Not Frightening
Wonderful and Remarkable News for DMD Community
[Source: Pixabay.com]

Wonderful and Remarkable News for DMD Community

  • Post author:Sabina Kennedy
  • Post published:November 4, 2016
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

On the surface, it seems self-evident that social collaboration can have a positive impact--especially when it comes to Duchenne muscular dystrophy (DMD). Working together with all invested participants to influence…

Continue Reading Wonderful and Remarkable News for DMD Community
10 Shocking Symptoms of Addison’s Disease Will Save Your Life

10 Shocking Symptoms of Addison’s Disease Will Save Your Life

  • Post author:Alisha Stone
  • Post published:November 4, 2016
  • Post category:Addison's Disease/Rare Disease

I am completely BAFFLED About Addison’s disease! Are you?! You Should be! It’s Monday night, and I’m sitting—rather, lounging on the sofa, feeling baffled after reading a post from a…

Continue Reading 10 Shocking Symptoms of Addison’s Disease Will Save Your Life
Como un paseo por el zoológico ayudó a dos niñas con distonía

Como un paseo por el zoológico ayudó a dos niñas con distonía

  • Post author:Patient Worthy Contributor
  • Post published:November 4, 2016
  • Post category:Dystonia/Rare Disease

Para los padres de niños con distonía, que la frustración es una realidad horrible, en curso. Los padres como Melissa Phelps de Gallaten, Kentucky lo sabe muy bien hijas-Madison y…

Continue Reading Como un paseo por el zoológico ayudó a dos niñas con distonía
Meme: Kindness = Strength

Meme: Kindness = Strength

  • Post author:Rebekah
  • Post published:November 3, 2016
  • Post category:Rare Disease

Don't let things as important as tenderness and compassion ever be mistaken for weakness or fragility!

Continue Reading Meme: Kindness = Strength
Show us your Gratitude Attitude!

Show us your Gratitude Attitude!

  • Post author:Kathy Devanny
  • Post published:November 3, 2016
  • Post category:Rare Disease

Sociologist Georg Simmel, calls Gratitude the “ moral memory of mankind”. But researchers tell us that gratitude is more than a moral or ethical acknowledgement of help of some kind.…

Continue Reading Show us your Gratitude Attitude!
Do YOU Know the Difference Between Cushing’s Disease and Syndrome?
[Source: Pixabay.com]

Do YOU Know the Difference Between Cushing’s Disease and Syndrome?

  • Post author:Alisha Stone
  • Post published:November 3, 2016
  • Post category:Cushing Disease/Rare Disease

In my humble opinion, the Urology Care Foundation has set the standard when it comes to providing factual information about Cushing’s syndrome (CS). And if you or your loved one…

Continue Reading Do YOU Know the Difference Between Cushing’s Disease and Syndrome?
The 2016 Presidential Campaign: An IPF Love Story
Source: pixabay.com

The 2016 Presidential Campaign: An IPF Love Story

  • Post author:Kiki Jones
  • Post published:November 3, 2016
  • Post category:Idiopathic Pulmonary Fibrosis/IPF/Rare Disease

2016 has been a very bizarre, upsetting year. As an American, I can’t wait until I can bury most everything about 2016 in the back corner of the history books.…

Continue Reading The 2016 Presidential Campaign: An IPF Love Story
The Astonishing and Sad Reality of Butterfly Children
[Source: pixabay.com]

The Astonishing and Sad Reality of Butterfly Children

  • Post author:Erica Zahn
  • Post published:November 3, 2016
  • Post category:Epidermolysis Bullosa

I always have a knee-jerk reaction that borders on anger when I read about babies who are dealt an unfair hand in the rare disease world. It seems incredibly unfair…

Continue Reading The Astonishing and Sad Reality of Butterfly Children
CRPS Deals Out Breathtaking Pain, No One Knows Why
Source: www.pixabay.com

CRPS Deals Out Breathtaking Pain, No One Knows Why

  • Post author:Erica Zahn
  • Post published:November 3, 2016
  • Post category:Complex Regional Pain Syndrome/Rare Disease/Timely

Lora Rossi once had a vibrant, active life. She spent her summer days at the beach with friends, she had a job she really enjoyed, and her future looked bright.…

Continue Reading CRPS Deals Out Breathtaking Pain, No One Knows Why
Live Facebook Event Tonight! Discussions about Grief

Live Facebook Event Tonight! Discussions about Grief

  • Post author:Rebekah
  • Post published:November 3, 2016
  • Post category:Rare Disease

Author of Permission to Mourn, Tom Zuba, has developed  a new way to “do grief”.  His own personal losses of daughter, son, and wife have led him on the path…

Continue Reading Live Facebook Event Tonight! Discussions about Grief
Fainting Is Not For The Faint Of Heart… Really.
Source: commons.wikipedia.org

Fainting Is Not For The Faint Of Heart… Really.

  • Post author:Erica Zahn
  • Post published:November 3, 2016
  • Post category:Dysautonomia

Have you ever fainted? I have. Three times and all were related to receiving shocking news. The first time was when my grandmother unexpectedly passed away. The second time was…

Continue Reading Fainting Is Not For The Faint Of Heart… Really.
For Focal Dystonia, What is the “Golden Crown?”

For Focal Dystonia, What is the “Golden Crown?”

  • Post author:Sabina Kennedy
  • Post published:November 3, 2016
  • Post category:Dystonia

Legend has it that Archimedes once ran through the streets of Syracuse naked yelling, “Eureka!” because he had discovered an amazing scientific principle. (BTW, if you're thinking, "What on earth…

Continue Reading For Focal Dystonia, What is the “Golden Crown?”
What Should You Know About Dystonia in Children?
Source: pixabay.com

What Should You Know About Dystonia in Children?

  • Post author:Sabina Kennedy
  • Post published:November 3, 2016
  • Post category:Dystonia/Rare Disease

The days of summer are at a close. The temperature has finally dropped, and there’s a chill in the air. A new season is upon us. Finally! School is back…

Continue Reading What Should You Know About Dystonia in Children?
5 cosas perdidas con acromegalia (y cómo mejorarlos)
[Source: Pixabay]

5 cosas perdidas con acromegalia (y cómo mejorarlos)

  • Post author:Patient Worthy Contributor
  • Post published:November 3, 2016
  • Post category:Acromegaly/Rare Disease

Cuando se tiene una enfermedad rara, las personas están obligados a darle la mirada. Usted sabe que el uno. Se dice: "Oh, bendita tu corazón; que ha perdido tanto ".…

Continue Reading 5 cosas perdidas con acromegalia (y cómo mejorarlos)
Yes to Any of These Questions Could Be Bad for You
Source: www.pixabay.com

Yes to Any of These Questions Could Be Bad for You

  • Post author:Alisha Stone
  • Post published:November 2, 2016
  • Post category:Cushing Disease/Rare Disease

Have you experienced unexplained, sudden weight gain? Or, despite the number of times you’ve faithfully stuck to a diet, have you failed to lose weight? If either or both of these…

Continue Reading Yes to Any of These Questions Could Be Bad for You
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Featured


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Metastatic Breast Cancer: Navigating Grief


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Illustration of mentor program members


The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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