POTS and Vasovagal Syncope: A Patient Story
In January-March of 2015, I was the healthiest I’d ever been... or so I thought. I worked out, drank plenty of water, had a great lifestyle and meal plan. In…
Maxine’s Dysautonomia Journey: Part 3
PTEN Hamartoma Tumor Syndrome (PHTS) What is PTEN Hamartoma Tumor Syndrome (PHTS)? PTEN hamartoma tumor syndrome (PHTS) is an umbrella term referring to a spectrum of conditions that are all…
Maxine’s Dysautonomia Journey: Part 3
To read parts 1 and 2 of Maxine's dysautonomia journey, click here and here. It was a complete scope of my upper gastro track and everything went well with the…
A woman's journey to get an Ehlers-Danlos diagnosis leads to awareness.
Maxine’s Dysautonomia Journey: Part 2
Check out part 1 of Maxine's dysautonomia story here. The ambulance took me to the hospital, where they not only started an IV but also began giving me blood. I…
Maxine’s Dysautonomia Journey: Part 1
This is the first installment of a three part dysautonomia story. “Every woman has a moment in life that changes everything. What’s that moment for you?” I read this question…
<a href="https://pixabay.com/users/eileenploh/">eileenploh</a> / Pixabay
Super Bowl MVP Nick Foles and Wife Tori Spread Awareness About POTS
According to a story from CNN, Nick Foles, who plays for the Philadelphia Eagles, helped lead the team to victory at the Super Bowl, and was awarded MVP for the…
My Dysautonomia Story: Kerry Hussey
My dysautonomia story starts around the year 2000, when I was 13 years old, though I never got a diagnosis until I was about 28! In the Fall of 2000, I…
Dysautonomia and POTS: A Patient Story
As a 26-year-old working mother, all of life seemed in place. A rewarding job, a precious baby, and a supportive husband filled the hours and made for great memories. Days…
What I Wish My PE Teacher Knew About EDS
This morning, I was on an elliptical before work, reflecting on the life-long journey I've been on with exercise and Ehlers-Danlos syndrome. I hated PE class as a kid. I…
Source: Celeste
High Schooler Spreads Awareness by Sharing Her Rare Disease Story
I'm Celeste, and I'm sharing my story because too many ill people go undiagnosed and too many healthy people know nothing of it. Being chronically ill is like (for lack…
Source: Jeremiah
The Road to a POTS Diagnosis and Beyond
My name is Jeremiah, and I have Postural Orthostatic Tachychardia (POTS). My body has been a source of significant challenges since I was very young. Asthma, unexplained rashes, passing out,…
Source: Pixabay
And Not Go Weary: The Long Journey to a Potential Dysautonomia Diagnosis
This patient story is written by PW Contributor Kim Hartgraves. I was in the military for nine and a half years, until I had to accept an honorable under medical…
Women Found to Have Genes Linked to IBS
A genome-wide association study on irritable bowl syndrome found several links to certain DNA variants that are only present in women, reports Healio. This is consistent with the disease, which…
Source: Devan Demmons
Devan Demmons and Service Dog Duke Make Pageant History while Raising Awareness about Dysautonomia
The 2018 Mrs. Maine International Pageant will be so much more than a celebration of poise and beauty. It will also make history when Devan Demmons will proudly walk on…
Cartoon of Kay (by @Potsiespoons)
From Lemons to Lemonade: How Kay Pursues Her Dreams After a Rare Disease Diagnosis
Khadeeja Munchi - Kay for short! - of South Africa may only be 21 years old, but her spirit and tenacity would confuse anyone into thinking she's decades older. "Life…
Simple Bedside Test May Help Doctors Diagnose Certain Degenerative Brain Diseases
Neurologists working at the NYU School of Medicine have developed a test that can identify some rare degenerative brain diseases, reports NYU Langone Health. Published in the Annals of Neurology…
13 Ehlers-Danlos Syndrome Clues I Missed
I lived with Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder, my whole life and had no idea until I was 21. The symptoms were all so random, separate, and…
Water Balloon Fueled Charity Event To Return Jan. 14th
If you live near Pompano Beach in Florida, the Water Balloon Bulls-eye charity event is not to be missed, reported Sun Sentinel. The event is focused on raising money, as…
Source: Pixabay
Teen Entrepreneur Isn’t Letting POTS Stop Him
For people with postural orthostatic tachycardia syndrome (POTS), everyday activities can sap a lot of strength. POTS is a form of dysautonomia that is characterized by a shortage of blood…
source: pixabay.com
How This Poet Made Having POTS and Dating Work
Kelley O'Brien's hands shook as she stood in her bathroom, preparing for a date. It wasn't that she was nervous, or at least, she wasn't nervous in the way that…
How Often Should You Google Your Rare Disease?
It had never even crossed my mind that there was a connection between my bruised skin, clicking jaw, Sally Hansen's strengthening nail polish, the blue skin on my hands in…
This Dog Rules! Showcasing Skills and Having Her Owner’s Back Living with POTS
We came across a 2016 CBS story about Harlow, a Golden Retriever service dog on social media that had already reached over 226K Likes on Facebook. This celebrity dog shows…
Dallas, Texas will Light Up Its Tallest Skyscraper in Support for Dysautonomia Awareness Month
The Bank of America building in Dallas, Texas will light itself up in turquoise on Saturday October 28th to show support for Dysautonomia Awareness Month. Everything's bigger in Texas, including…
My Rare Diseases May Not Kill Me, But Sometimes It Feels Like They Will
When I was undergoing a tough treatment and reeling from the death of my God-sister, I was definitely down in the dumps. I couldn't really walk and I was hooked…
Spoonspirations: More than Just a Name
Back in 2015 I was diagnosed with POTS, a form of dysautonomia. Dysauto-what? Yeah, exactly what I was thinking. After doing all my research and being super upset at what…