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Author: PW Blogger

This author has written 124 articles
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This Amazing CF Momma Will Inspire You!

This Amazing CF Momma Will Inspire You!

  • Post author:PW Blogger
  • Post published:December 28, 2016
  • Post category:Cystic Fibrosis/Rare Disease

It is always so heartwarming to read a great story. Especially, when someone beats the odds and overcomes something tremendous. Nicole Kelly's parents did not think they would see their…

Continue Reading This Amazing CF Momma Will Inspire You!
The Secrets of Being a Woman with Von Willebrand
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The Secrets of Being a Woman with Von Willebrand

  • Post author:PW Blogger
  • Post published:December 19, 2016
  • Post category:Rare Disease/Von Willebrand's Disease

Most people have become a little annoyed over all the strange news about the Presidential Election. I do think that many hot social issues have come up despite all the nonsense. Our country has…

Continue Reading The Secrets of Being a Woman with Von Willebrand
You Gotta See This Innovative New Research for IPF
Source: pixabay.com

You Gotta See This Innovative New Research for IPF

  • Post author:PW Blogger
  • Post published:December 12, 2016
  • Post category:Idiopathic Pulmonary Fibrosis/IPF/Rare Disease

Movies, television shows, and books can create a vision of a world with endless possibilities. The future can be portrayed in ways that we would find impossible in the present…

Continue Reading You Gotta See This Innovative New Research for IPF
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!
Cystic Fibrosis Met Its Match with a Woman on Facebook
Source: Pexels.com

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
Cystic Fibrosis Changed Their Lives. They’ve Changed A Community.
Source: Pexels.com

Cystic Fibrosis Changed Their Lives. They’ve Changed A Community.

  • Post author:PW Blogger
  • Post published:December 1, 2016
  • Post category:Cystic Fibrosis/Timely

This community has come together in a big way to support a local family. Eric Frisbee and his wife, Julie, have two daughters that are living with cystic fibrosis. They…

Continue Reading Cystic Fibrosis Changed Their Lives. They’ve Changed A Community.
How Does a Boy with Tourette’s Respond to Cruelty?
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How Does a Boy with Tourette’s Respond to Cruelty?

  • Post author:PW Blogger
  • Post published:November 28, 2016
  • Post category:Rare Disease/Tourette syndrome

Children can be cruel. It's an age-old saying. I don't feel it excuses the behavior, but it is often offered up as a reason for the seemingly heartless behavior children…

Continue Reading How Does a Boy with Tourette’s Respond to Cruelty?
This Doc has MG. You’ll Want to Know Her Story.
[Source: pixabay.com]

This Doc has MG. You’ll Want to Know Her Story.

  • Post author:PW Blogger
  • Post published:November 25, 2016
  • Post category:Myasthenia Gravis/Rare Disease

How often may we get the chance to hear about how a doctor feels in dealing with their own chronic conditions? Not very often, right. Well, watch this interview from…

Continue Reading This Doc has MG. You’ll Want to Know Her Story.
It’s About Damn Time People Are Paying Attention to CFS
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It’s About Damn Time People Are Paying Attention to CFS

  • Post author:PW Blogger
  • Post published:November 25, 2016
  • Post category:Carnitine palmitoyl transferase 2 deficiency/Rare Disease

You wake up from a full night's sleep. You begin your daily routine: Get dressed, brush your teeth, comb your hair... and suddenly you have no more energy to do anything…

Continue Reading It’s About Damn Time People Are Paying Attention to CFS
When Should You Not Take This Medicine as Prescribed?
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When Should You Not Take This Medicine as Prescribed?

  • Post author:PW Blogger
  • Post published:November 16, 2016
  • Post category:Cystic Fibrosis/Rare Disease

When an arthritis medication can bring hope to so many more... Cystic fibrosis is a disease that affects the respiratory system and also the gastrointestinal system. There are 2 certain inflammasomes, called…

Continue Reading When Should You Not Take This Medicine as Prescribed?
How to Stay Strong When You Have EDS
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How to Stay Strong When You Have EDS

  • Post author:PW Blogger
  • Post published:November 16, 2016
  • Post category:Ehlers-Danlos Syndrome/Rare Disease

How would you respond if your body did not work for you but against you? What if you felt that your body was actually your enemy? For people with Ehlers-Danlos…

Continue Reading How to Stay Strong When You Have EDS
Back to Basics: What You Need To Know About PAH
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Back to Basics: What You Need To Know About PAH

  • Post author:PW Blogger
  • Post published:November 11, 2016
  • Post category:pulmonary arterial hypertension/Rare Disease

The human body is a magnificent creation. Everything works together as one big “machine.” However, from time to time for some unknown reasons we may develop a glitch that alters…

Continue Reading Back to Basics: What You Need To Know About PAH
Why You Need to Check Out This Sarcoidosis Foundation
Source: pixabay.com

Why You Need to Check Out This Sarcoidosis Foundation

  • Post author:PW Blogger
  • Post published:November 11, 2016
  • Post category:Rare Disease/Sarcoidosis

You couldn't breathe, you had swollen lymph nodes and a cough that would not go away. You go to the doctor and had some test done. You are told you have…

Continue Reading Why You Need to Check Out This Sarcoidosis Foundation
This Brave Woman Bled for 5 Years. But You Won’t Have To!
pixabay

This Brave Woman Bled for 5 Years. But You Won’t Have To!

  • Post author:PW Blogger
  • Post published:November 10, 2016
  • Post category:Rare Disease

For so many people, hearing the word "normal" come out of a doctor's mouth can be comforting. But for Chloe Christos, now 27 and diagnosed with von Willebrand disease (vWD), this…

Continue Reading This Brave Woman Bled for 5 Years. But You Won’t Have To!
Can You Imagine Waking Up in the Hospital to this News?
Source: www.pixabay.com

Can You Imagine Waking Up in the Hospital to this News?

  • Post author:PW Blogger
  • Post published:November 9, 2016
  • Post category:Lennox-Gastaut syndrome/Rare Disease

I woke up in an emergency room surrounded by nurses, doctors, and tearful friends. I had no idea how I got there or how long I had been there. I…

Continue Reading Can You Imagine Waking Up in the Hospital to this News?
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
Bottom Line: Clean Your Child’s Nebulizer. It’s Disgusting
Pixabay

Bottom Line: Clean Your Child’s Nebulizer. It’s Disgusting

  • Post author:PW Blogger
  • Post published:November 1, 2016
  • Post category:Cystic Fibrosis/Rare Disease

Sometimes when a person has to fight the daily battles with chronic disease, some things just don't seem as important as others. Occasionally, patients with chronic disease are understandably focused…

Continue Reading Bottom Line: Clean Your Child’s Nebulizer. It’s Disgusting
Do You Know About CF and Diabetes?
[Source: pixabay.com]

Do You Know About CF and Diabetes?

  • Post author:PW Blogger
  • Post published:October 31, 2016
  • Post category:Cystic Fibrosis

What do you think of when you hear "diabetes"? I always think of lots of sugar, soda and candy. Diabetes can really affect anyone's life, as I learned recently from…

Continue Reading Do You Know About CF and Diabetes?
My “Anxiety Disorder” May Be Something Else Completely?
Source: www.pixabay.com

My “Anxiety Disorder” May Be Something Else Completely?

  • Post author:PW Blogger
  • Post published:October 26, 2016
  • Post category:Dysautonomia/POTS/Rare Disease

One day you go from being an active person full of life to waking up not feeling like yourself. You get a bad cold. You never seem to bounce back.…

Continue Reading My “Anxiety Disorder” May Be Something Else Completely?
CRPS/RSD: I’m Sorry I Didn’t Think of That Dad
Source: flickr.com

CRPS/RSD: I’m Sorry I Didn’t Think of That Dad

  • Post author:PW Blogger
  • Post published:October 24, 2016
  • Post category:Complex Regional Pain Syndrome/Rare Disease

From the day my mother introduced us when I was eight, I've believed my step-father was my hero. He is a strong, hardworking, honest man whom I saw as indestructible.…

Continue Reading CRPS/RSD: I’m Sorry I Didn’t Think of That Dad
This Man with Cystic Fibrosis Exercises His Way Out of the Hospital
Source: www.pixabay.com

This Man with Cystic Fibrosis Exercises His Way Out of the Hospital

  • Post author:PW Blogger
  • Post published:October 14, 2016
  • Post category:Cystic Fibrosis/Rare Disease

People mostly know that cystic fibrosis (CF) causes issues with the lungs—to the point of breathing difficulty. Contrary to common assumptions, cystic fibrosis also affects the pancreas, making it difficult…

Continue Reading This Man with Cystic Fibrosis Exercises His Way Out of the Hospital
One Great Author is Huntington’s New Champion
https://pixabay.com/en/book-heart-love-grains-sand-sea-2115176/

One Great Author is Huntington’s New Champion

  • Post author:PW Blogger
  • Post published:October 12, 2016
  • Post category:Huntington's disease/Rare Disease

For me, a good book has the ability to transport me to another place. I often find myself escaping within the pages to another world created by the author. Through…

Continue Reading One Great Author is Huntington’s New Champion
Why a CF Diagnosis Can Make You Feel So Alone
Source: pixabay.com

Why a CF Diagnosis Can Make You Feel So Alone

  • Post author:PW Blogger
  • Post published:October 4, 2016
  • Post category:Cystic Fibrosis/Rare Disease

Living with cystic fibrosis(CF) can change everything. When you hear that someone, whom you love deeply, has been diagnosed with something that is incurable your life changes dramatically. When reading…

Continue Reading Why a CF Diagnosis Can Make You Feel So Alone
Is Social Taboo The Reason Behind Your Misdiagnosis?
Pixabay

Is Social Taboo The Reason Behind Your Misdiagnosis?

  • Post author:PW Blogger
  • Post published:September 23, 2016
  • Post category:Rare Disease/Von Willebrand's Disease

Life is hard. Life gets even harder for a woman once a month. The topic of menstruation always has been sort of taboo. I remember getting my first period. While crying on the toilet,…

Continue Reading Is Social Taboo The Reason Behind Your Misdiagnosis?
Why There’s No Good Time to Slow Down with POTS

Why There’s No Good Time to Slow Down with POTS

  • Post author:PW Blogger
  • Post published:September 23, 2016
  • Post category:Dysautonomia/POTS/Rare Disease

Lifestyle adjustments. You know your life will change once you get a disease diagnosis. These changes may be easy or hard depending on how you are currently living life. For…

Continue Reading Why There’s No Good Time to Slow Down with POTS
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You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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