Drag Queen on RuPaul’s Drag Race Television Show Talks About Ehlers-Danlos Syndrome
Any fans of RuPaul Drag Race or the art of drag itself? Raise your manicured hand! Well, regardless of your answer - watch how the world of drag and rare…
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International Genetic Research Group to Begin Study of Hypermobile Ehlers-Danlos Syndrome (hEDS)
A recent announcement by the Ehlers-Danlos Society marks the beginning of the recruitment phase for an international study devoted to determining the root cause of hEDS. The gathering of this…
<a href="https://pixabay.com/users/frolicsomepl/">frolicsomepl</a> / Pixabay
ICYMI: FDA Clears New Drug Application and Grants Priority Review for Potential Ehlers-Danlos Syndrome Drug
According to a story from BioPortfolio, the pharmaceutical company Acer Therapeutics, Inc., recently announced the company's New Drug Application (NDA) has been accepted by the US Food and Drug Administration…
<a href="https://pixabay.com/users/phoenixwil/">phoenixwil</a> / Pixabay
Marfan and Ehlers-Danlos Patients May Want to Avoid This Class of Antibiotics
According to a story from WebMD, the US Food and Drug Administration recently issued a warning about a class of antibiotic drugs called fluoroquinolones. They have been linked to an…
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FDA Accepts New Drug Application for Vascular Ehlers-Danlos Drug
According to a story by MarketScreener, pharmaceutical company Acer Therapeutics Inc. has submitted a New Drug Application (NDA) for its vascular Ehlers-Danlos syndrome (vEDS) drug Edsivo. The NDA was granted…
Are Chiropractors Safe for People with Ehlers-Danlos Syndrome?
Patients living with any of the Ehlers-Danlos syndromes (EDS) might be tempted to one day visit a chiropractor. The implications of the condition might also make make them equally hesitant…
I’m Not Sicker Than Someone Who Can’t Get an EDS Diagnosis
While I write about rare and neglected disorders all the time, very few people in my life actually know about my own experience. I have hypermobile Ehlers-Danlos syndrome (EDS), a…
<a href="https://pixabay.com/users/DarkoStojanovic/">DarkoStojanovic</a> / Pixabay
A New Drug Application Has Been Submitted For a Potential Vascular Ehlers-Danlos Syndrome Treatment
Acer Therapeutics has submitted a New Drug Application to the United States Food and Drug Administration on behalf of Edsivo™, their experimental treatment for vascular Ehlers-Danlos syndrome. To find…
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…
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…
<a href="https://pixabay.com/users/kaboompics/">kaboompics</a> / Pixabay
Why Snapchat’s Talent Show is Actually Pretty Unsettling
I know that it's been months since Kylie Jenner tweeted that Snapchat was over, and the company stock dropped like a billion dollars over night, but if you, like me,…
Photo courtesy of the Ehlers-Danlos Society
“We don’t want to be invisible anymore”: EDS Stories Shared at the #ZebraStrong Rally
On August 4th, the Ehlers-Danlos Society led the Zebra Strong Rally, which concluded the third day of the Ehlers-Danlos Syndrome Learning Conference in Baltimore, Maryland. Advocating for Ehlers-Danlos Syndrome The…
How Being a Good Patient Nearly Killed Me
I came into the hospital about four days ago at 6 am in extreme abdominal pain. I remember writhing on the emergency room bed and breathing so frantically that my…
Performance of "It's Our Time," a song about the search for an EDS diagnosis.
Ehlers-Danlos Society Dazzles at the Zebra Ball
Recently, the Ehlers-Danlos Society held its second annual Zebra Ball at the EDS World Learning Conference in Baltimore, Maryland. The event fundraised for further support and awareness of Ehlers-Danlos syndrome…
<a href="https://pixabay.com/users/qimono/">qimono</a> / Pixabay
There is No Ehlers-Danlos Syndrome Nutshell, But Here’s an Overview of the Known Types
Ehlers-Danlos syndromes (EDS) are a group of rare conditions that affect the connective tissue and can be inherited. Connective tissue lies between tissues and organs throughout the body and helps…
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Why Exactly do Ehlers-Danlos Syndrome Patients have Anxiety Disorders?
I'll start this article, like many others, by mentioning that although I'm convinced I know everything about everything because I minored in biology in college, I'm really not a doctor.…
<a href="https://pixabay.com/users/skeeze/">skeeze</a> / Pixabay
New Device Can Successfully Treat Potentially Fatal Aortic Aneurysms
According to a story from the Tampa Bay Times, Dr. Murray Shames, who works at the Tampa General Hospital, has been finding success using a new device to treatment dangerous…
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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…
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High School Junior with EDS Banned From Prom for Missing Too Many Days of School?
According to a story from CTV News, Triss Hunter is a junior at Ecole Mission Senior Secondary School in the Fraser Valley. This year, she is not being permitted to…
A New Twitter Hashtag is Challenging Ableist Attitudes
The hashtag #hotpersoninawheelchair went viral after the Youtuber and activist Annie Segarra used it as a response to an offensive tweet by Ken Jennings, reports The Guardian. Jennings, best known…
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8 Ehlers-Danlos Symptoms That Are Secretly Kind Of Fun
No matter which way you spin it, Ehlers-Danlos syndrome (EDS) is generally not a great time. EDS is a rare genetic condition that affects connective tissue throughout the body. It…
<a href="https://pixabay.com/users/AdinaVoicu/">AdinaVoicu</a> / Pixabay
Chronic Illness Life: 9 Inappropriate Places I’ve Fallen Asleep
As most people with invisible illnesses know, it's hard to explain certain behaviors to people when you don't "look sick." There's an endless list of symptoms that need to be…
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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…
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#IKnowMarfan: February is Marfan Syndrome Awareness Month!
You'd be excused if many (or even most) of you have never heard of this rare disease - which is why it's important to observe rare disease awareness months. Marfan…
