A Glimpse into Lauren’s Journey with POTS and IST
My name is Lauren. I’m 24 years old and I’m an ICU nurse from Texas. Last May, I was diagnosed with postural orthostatic tachycardia syndrome (POTS) and inappropriate sinus tachycardia (IST).…
How Changes to Facebook’s Algorithm Might be Affecting Fundraising and Awareness Pages
Facebook has been making changes to how content will be shared on people’s newsfeeds. These are designed to help users connect more with friends and family, and limit the number…
Meet Hannah: a 27-Year-Old with EDS, POTS, MCAS, and Blood Cancer Fundraising for Treatment in the USA
Hannah Evans, a 27-year-old woman from South Wales with several rare diseases, has reached her £37,500 fundraising goal that will support her trip to America to access an experimental and…
How to Make October Work for Dysautonomia Awareness
October is Dysautonomia Awareness Month! Before we get into advocacy, let's touch on basic awareness... What is dysautonomia? Dysautonomia is the umbrella term that encompasses several different conditions that cause a…
Photo courtesy of Lindsay Fogarty
Raising a Son While Managing POTS, EDS, and Gastroparesis: Lindsay’s Story
My name is Lindsay Fogarty. I am a 25-year-old single mother to a wonderful 6, almost 7-year-old son, named Andrew. As I am writing this I am listening to the…
Photo courtesy of Amber Summers
POTS… My Unwanted Blessing
That title. How can blessing and POTS even coexist in the same sentence? Well, my journey started in 2000 when I began noticing strange things happening in my body: intense…
Life With Dysautonomia: Miss Amy’s Story, Part 2
TMI Alert! Pooping, or lack thereof, deserves its own book. Constipation. Hemorrhoids. Ugh! Nothing helped. Over the counter remedies, enemas, plenty of fluids, a diet high in fiber. I tried…
<a href="https://pixabay.com/users/kangbch/">kangbch</a> / Pixabay
Life With Dysautonomia: Miss Amy’s Story, Part 1
Hello there! My name is Amy. My friends call me Miss Amy. I’m 42 years old and I have a 21-year-old son who also shares the same diagnosis as me.…
How Getting Diagnosed With POTS Changed My Life: A Patient Story
The Beginning My story began in February 2011. On January 10th, 2011, my husband and I were involved in an accident in which we slid off the side of a bridge 10 feet face…
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…
