source: pixabay.com
Meet Carina Imbrogno, a Rare Artist Living with Ehlers-Danlos Syndrome, Part 2
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…
source: pixabay.com
Meet Carina Imbrogno, a Rare Artist Living with Ehlers-Danlos Syndrome
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…
‘We Are Visible’ — How Karina Turned Advocacy into Art
'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…
Invisible Illness – Documentary Screening in Orange, CA
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…
<a href="https://pixabay.com/users/tasha/">tasha</a> / Pixabay
Ehlers-Danlos Syndrome and Pregnancy: What are the Risks?
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…
<a href="https://pixabay.com/users/Free-Photos/">Free-Photos</a> / Pixabay
4 Things I’ve Learned Since Getting MdDS
‘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…
<a href="https://pixabay.com/users/stevepb/">stevepb</a> / Pixabay
This Ehlers-Danlos Syndrome Patient is Unifying Others Through Music
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…
Man with Rare Disease Organizes Musical Ensemble with Other Chronic Disease Patients
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 href="https://pixabay.com/users/felixioncool/">felixioncool</a> / Pixabay
Study to Investigate the Development of Lung Disease in Connective Tissue Disorders
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…
https://pixabay.com/en/money-piggy-bank-coins-finance-2180338/
GoFundMe for Sara Geurts, Model with Ehlers-Danlos Bedridden After New Diagnosis
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…
<a href="https://pixabay.com/users/PhotoMIX-Company/">PhotoMIX-Company</a> / Pixabay
Vascular Ehlers-Danlos Syndrome Patient Data Released Following Study
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…
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…
.png)
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…
https://pixabay.com/en/drugs-capsule-pill-medicine-2031442/
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…
<a href="https://pixabay.com/users/NeuPaddy/">NeuPaddy</a> / Pixabay
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…
source: pixabay.com
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 out…
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…
