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…
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…
I wanted to invite the invisibly disabled community to join the screening of ‘We Are Visible’, my film about people living with an invisible condition (Ehlers-Danlos syndrome) all around the…
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…
‘The future is here, it’s just not very evenly distributed’ William Gibson These days there’s much more literature about mal de debarquement syndrome (MdDS) and this resource gives excellent information…
According to a story from news.yale.edu, Yale alum Jordan Plotner began experiencing his first symptoms of Ehlers-Danlos syndrome when he was a sophmore. He experienced episodes of brain fog and…
Talk about a bittersweet symphony! Published on Yale University's online paper, recent grad Jordan Plotner -- who is living with Ehlers-Danlos syndrome (EDS) -- organized a virtual musical ensemble with other…
A study record from clinicaltrials.gov is investigating the appearance of lung problems in patients with disorders affecting connective tissue. While prior research has documented the appearance of interstitial lung disease…
According to a publication from People, Sara Geurts, a 28-year-old model with Ehlers-Danlos syndrome, has been bedridden for several weeks due to complications linked to her condition. Geurts, a Minneapolis…
According to a story from globenewswire.com, the pharmaceutical company Acer Therapeutics recently announced the release of data from a long-term observational study of patients with vascular Ehlers-Danlos syndrome (vEDS). All…
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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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…
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…
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…
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…
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…
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…
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 out…
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…
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