Recently I was asked to write a piece about what I am thankful for this Thanksgiving. My first reaction was, "Oh God, Thanksgiving is actually here again?" I don't have…
“The patient network is incredibly important,” Lina Williamson, PhD, explained to me. You see, in her childhood, Lina experienced a number of seemingly unexplainable symptoms: severe and sometimes debilitating leg…
My story starts with me being a normal, healthy kid. Or was I? My parents would’ve said so, and so would I, I think. I just wasn’t very strong or…
Click here for part 1! At this point my joint pain was severely impacting my quality of life, so I looked for other sources of help. I joined a…
Ryan Kress was crowned Ms. Wheelchair Virginia 2020 and Camille Schrier was crowned Miss America 2020. Besides their titles, what brings these two individuals together is their medical diagnosis with…
Pediatric Concerns in EDS and HSD: Exploring The Impact of Misdiagnosis January 10, 2021 Virtual Webinar Event Hear from members of the Ehlers-Danlo syndrome community who have been affected by…
In a recent press release, pharmaceutical company Acer Therapeutics, Inc. ("Acer") announced the publication of data on celiprolol for patients with COL3A1-positive vascular Ehlers-Danlos Syndrome (vEDS). The article, published in the European…
To read part 1 of Nikole's Holiday Confession, click here. I feel guilty when my limitations force others to have to alter their holiday expectations. Like, how do I tell…
Pumpkin pie, ginger-bread cookies, candy canes, and chocolates. Oh what a sweet season! A few nights ago my kids and I spent a few hours crouched over the wafting smells…
Crystal Goodwin, from South Portland, Maine, was diagnosed with mast cell activation syndrome (MCAS) back in 2011. A rare disease diagnosis can turn one's life upside down, and Crystal is…
The Ehlers Danlos Society's European Learning Conference November 7-8, 2020 This event will feature presentations from world-renowned experts on Ehlers-Danlos syndrome and related conditions, including the latest in research and…
When I was 12 years old, following my mom’s sudden cardiac arrests, I was diagnosed with a rare, genetic sudden arrhythmia death syndrome called congenital long QT syndrome type 5.…
Arterial Dissection Arterial dissections refer to the tearing of the inner wall of an artery. Pregnancy creates stress on the body's blood vessels and in rare cases dissections can occur.…
According to a story from Youth Today, the Americans with Disabilities Act (ADA) was first passed 30 years ago, in 1990. This historic law helps protect people that live with…
For Emma, the worst part of receiving her diagnosis with ankylosing spondylitis wasn't adapting to the constant pain, losing her breath over five minutes of standing, being too exhausted to…
In Prohealth, Marlane Quade Cook draws on her own experience with Ehlers-Danlos syndrome to question whether the medical community has enough information and education to properly diagnose all 13 subtypes…
In a story written for The Washington Post, Jessica Slice writes about a frightful predicament for patients with chronic illnesses that cause disability. Jessica lives with dysautonomia and hypermobile Ehlers-Danlos…
Continued from Part 1 The surgery was over 12 hours long. I have two rods and 26 screws holding my spine and had nine ribs cut and reduced in…
I was born in 1974 in Buenos Aires, Argentina to Italian immigrants. I was born with a rare genetic disorder called Ehlers-Danlos syndrome kyphoscoliosis type, but it was not diagnosed…
'What you can't see can't hurt you.' It's a classic and well-intentioned phrase, but we know it to be quite untrue; especially if you ask any one of the millions…
As originally reported in PR Week; pharma company Takeda has been joined a plethora of rare patients groups to create the 'I am Number 17 ' campaign which features 17…
'We Are Visible' Film Screening January 12th, 2020 at 2pm Chapman University, Beckman Hall, Room 404 Karina Sturm's life was changed forever in 2010 when several 'invisible' rare conditions such…
Recently, different celebrities have been making their chronic conditions public via social media. Lena Dunham was motivated for a similar reason to Billie Eilish, who revealed she has Tourette syndrome,…
In a story from Medical Xpress, the authors of a recent study declared that maternity care for pregnant women with Ehlers-Danlos syndrome (EDS) is in dire need of improvement. Ehlers-Danlos…
On Friday, internationally renowned singer-songwriter Sia tweeted, "Hey, I'm suffering with chronic pain, a neurological disease, ehlers danlos and I just wanted to say to those of you suffering from…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
