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One Little Boy Broke My Heart Until His Family Did This

By Alisha Stone / September 7, 2016 / 0 Comments
My heart goes out to two sets of courageous parents. They're the parents of two little baby boys, strangers who collided in a strange twist of fate, and were brought together by love and a lifesaving heart transplant. I can only...

Deadly Rare Kidney Cancer Has a Potential New Standard of Care

By Jessica Gladwell / September 14, 2017 / 0 Comments
Renal cell carcinoma is a particularly brutal cancer. Though rare, it is the most common kidney cancer in adults. While it starts there, it can also spread to the lungs and other organs. In many cases, by the time symptoms...

New Hope on the Horizon for Cystic Fibrosis Treatment

By Erica Zahn / June 7, 2017 / 0 Comments
Cystic fibrosis (CF) is an inherited autosomal disease that causes severe damage to the lungs, digestive system, and other organs in the body. The damage occurs because the cells that make mucus, sweat, and digestive juices cause those liquids to be...

When a Genuine Voice Boosts POTS Practical Support

By Sabina Kennedy / October 27, 2016 / 1 Comment
Call me biased, but blogs are changing everything. Millions of blogs have sprung up over the last few years and transformed the publishing world. Blogging turned the once-boring web into an ever-changing, dynamic creature.  With the advent of the blog came blogging...

Aplastic Anemia: What Did Baseball Do for One Happy Little Boy?

By Alisha Stone / October 13, 2016 / 1 Comment
A routine opening day, scores big for aplastic anemia! Little leaguers and other little T-ballers gathered ‘round the city of Lee, New York back in May 2016. As exciting as opening day was, what stole the show was a little...

Her Book About Living with Chronic Pain Will Make You Cheer

By Alisha Stone / October 11, 2016 / 0 Comments
I’ve been doing a lot of reading lately on Cushing’s Disease and happened to come across a book review of Choose Joy by Salina Gibson. I could relate to it on many levels. At first, I was going to dismiss it...

The Bottom Line? Transplant is the Only Thing That Cures IPF

By Farrah Fontaine / October 6, 2016 / 1 Comment
Getting a diagnosis of idiopathic pulmonary fibrosis, or IPF, is probably one of the scariest things you can hear. For Joyce, it certainly was. While she didn't know completely what IPF is (idiopathic pulmonary fibrosis isn't something you hear every...

How Do You Know If Your Kid Has Behcet’s?

By Farrah Fontaine / August 31, 2016 / 0 Comments
If you're familiar with Behcet's disease and how it's diagnosed, you might be curious to learn how it's different for children. "Children?" you ask. Yes, children. Even though most people tend to develop Behcet's symptoms in their 20s and 30s,...

Rare Opportunity to Rub Elbows With Biotech Head Honchos

By Alisha Stone / May 12, 2016 / 0 Comments
July 24-28, the World Federation of Hemophilia will be hosting its annual World Congress meeting—this time, in Orlando, Florida. As you might imagine, many pharmaceutical and biotech companies will be attending as sponsors of certain events. The very best scientists and...
bullseye with dart

Local Support Group Helps Those Who Suffer from Lyme Disease

By Alisha Stone / May 10, 2016 / 0 Comments
Let’s hear it for the Nor-Cal Chico Lyme disease support group based in California, which I read about in an Orion article by Roberto Fonseca! This non-profit society began back in 2012 and is designed for people and their loved...

What a Freaking Nightmare: No One is Safe From Lyme Disease!

By Alisha Stone / May 6, 2016 / 0 Comments
As a child growing up in Kentucky, my parents were more concerned about me getting chigger bites than tick bites. Looking back, a day after picking wildflowers in the field behind our log cabin, (yes, I'm serious!) I looked like...

Patient Worthy Succeeds 1000 Post Milestone

By Patient Worthy Contributor / April 14, 2016 / 0 Comments
Patient Worthy Succeeds 1000 Post Milestone and We Couldn't Have Done it Without You! Yes that feature image is of cupcakes- funfetti cupcakes to be exact. Baked with love by our Content Curation Manager Rebekah to celebrate! On June 22,...

CDC Zika Update – “Scarier than initially thought”

By Patient Worthy Contributor / April 14, 2016 / 0 Comments
If successfully dealing with the Ebola Outbreak for the past two years wasn't enough, the Western Hemisphere outbreak of the Zika Virus is coming in on the heals of that epidemic. Since April 2015, various health organizations from the many...

Here’s How to Protect Your Baby Against Dangerous BPD

By Alisha Stone / April 6, 2016 / 0 Comments
Hey, listen up! If you or someone you love is going to have a baby, I know you’ve already got a ton of stuff on your mind. But you need to take GREAT CARE to check out this highly important...

Meme Making Contest – WE HAVE A WINNER #PWMemeChallenge

By Patient Worthy Contributor / April 5, 2016 / 0 Comments
Ladies and Gentlemen, the wait is now over! Patient Worthy has found its first #PWMemeChallenge winner! Our very first winner is no other than, the one and only: Ms. Laurie Lelacheur, a bronze level Patient Worthy contributor   Laurie is...

Meme Making Contest – Are YOU Worthy Enough? #PWMemeWeek

By Patient Worthy Contributor / April 4, 2016 / 0 Comments
IIIIIIIIITTSS.... MEEEEMEEEEE MAAAKING TIIIIIIIIIIIIIME! Remember that sneaky little quip I hid not so secretly into a 366 talking tip post a couple of weeks back? well the time has come and we sure hope you've been getting your meme game...

Meme Making Contest – Are YOU Worthy Enough? #PWMemeWeek

By Patient Worthy Contributor / March 16, 2016 / 2 Comments
IIIIIIIIITTSS.... MEEEEMEEEEE MAAAKING TIIIIIIIIIIIIIME! Remember that sneaky little quip I hid not so secretly into a 366 talking tip post a couple of weeks back? well the time has come and we sure hope you've been getting your meme game...

Rare Diseases Could Be Diagnosed Earlier with Better Training for GPs to Avoid Years of Misdiagnosis

By Rose Duesterwald / March 8, 2019 / 0 Comments
Although each disease on its own may be rare, a huge number of people are living with a rare disease-- and half of these people are children. About 30 percent of these children will die before the age of five. Genetic testing has...
Woman thinking in the sunlight

What is it Like Living with Addison’s Disease?

By Jennifer Walker / December 14, 2016 / 1 Comment
Living with Addison’s disease can be a challenge. Addison’s disease, also known as adrenal insufficiency or hypocortisolism, is a rare disorder of the endocrine system and affects approximately 1 out of 100,000 people. It is most commonly caused by an...
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