Proof of EDS? (via DarkWaterfall)
What better way to return after an extended absence than with an informative video addressing the burden of proof and running through a couple of hand “tricks” common to EDSers? There’s been a lot going on in the health blogosphere lately and EDS Awareness month is quickly approaching us. Expect a roundup soon.
“Recent studies have demonstrated that chronic pain harms cortical areas unrelated to pain, but whether these structural impairments and behavioral deficits are connected by a single mechanism is as of yet unknown. Here we propose that long-term pain alters the functional connectivity of cortical regions known to be active at rest, i.e., the components of the “default mode network” (DMN).” …
“Studying with fMRI a group of chronic back pain (CBP) patients and healthy controls while executing a simple visual attention task, we discovered that CBP patients, despite performing the task equally well as controls, displayed reduced deactivation in several key DMN regions. These findings demonstrate that chronic pain has a widespread impact on overall brain function, and suggest that disruptions of the DMN may underlie the cognitive and behavioral impairments accompanying chronic pain.”
Lift For Life event- March 7th at Colgate University to benefit the EDNF: http://tinyurl.com/b7yt84
HAMILTON, N.Y. (2/24/09) – The Colgate football team will hold its second annual Lift For Life event on Saturday, March 7 at the Sanford Field House at 6 p.m. The event will help raise funds and awareness for Ehlers-Danlos Syndrome.
Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that affect your connective tissues – primarily your skin, joints and blood vessel walls. With EDS, genetic mutations disrupt the production of collagen, a chief component of connective tissue.
Ehlers-Danlos syndrome is uncommon and occurs in six major types. All types affect your joints, and most also affect your skin. Some of the more prominent symptoms of Ehlers-Danlos syndrome include flexible joints that extend beyond the normal range of movement, and skin that’s especially stretchy or fragile.
The event this year really hits home because it directly effects a teammate and his family,” said junior linebacker Greg Hadley. “Last year was nice to get the event off the ground and do some good, but when you are out there for people you care about, like Ryan Meyers, it’s special. That’s what Uplifting Athletes is all about.”
Colgate football players are members of the Uplifting Athletes, Inc., an organization established to raise awareness for rare diseases. Other college football programs currently involved are Penn State, Ohio State and Maryland.
The event will feature Colgate football players competing in lifting and skills competition. Colgate fans will have a chance to meet the players with an autograph session after the competition. The first 100 fans will receive free T-shirts, and other gifts, including an autographed helmet and jersey from Donovan McNabb, will be raffled off along with other prizes from local businesses.
Admission to the fund-raiser is $5.00 for adults, $3.00 for college students and free for children under eight.
“It means the world to me and my family that the team would pick a disease that benefits my sister’s disease,” said Meyers, a senior quarterback. “It just shows you that a football team is truly a family, looking out for one another through the thick and the thin.”
“The football student-athletes at Colgate have been great to work with and have really embraced their ability to make a positive and lasting impact,” said Scott Shirley, Executive Director of Uplifting Athletes, Inc. “By choosing to benefit the Ehlers-Danlos National Foundation, Colgate Football Uplifting Athletes is able to make the rare disease cause relevant to the team and make a significant impact with their efforts.”
Uplifting Athletes, Inc. is 501 © 3 nonprofit organization whose mission is to leverage college football to change the perception of rare diseases and raise them as a national priority. University chapters are operated by current football student-athletes and raise funds and awareness for charities that support a rare disease. For more information about Uplifting Athletes or to make a tax-deductible contribution, please visit www.upliftingathletes.org.
Ehlers-Danlos syndrome: Take Your Time (via ufo8mykat)
Sama posts a lot of insightful videos about her experiences with EDS. Her most recent describes the tradeoffs that go along with making plans. Very relatable & highly recommended.
Firm Faith leads Frisch to pen book in face of grave illness
Jackie Frisch has EDS and was featured on Extreme Home Makeover a few months ago. Her book isn’t about Ehlers Danlos, but it she’s raising awareness by making it a part of the discussion whenever she can.
PEN AGAIN
the name of this product says it all—it literally allows people with arthritis, ehlers-danlos syndrome (EDS), carpal tunnel, tendinitis and other conditions that cause pain while writing to PEN (write) AGAIN
it may look like a prototype for a futuristic spacecraft, but it’s an elegant ergonomic solution that makes writing more comfortable for millions of people worldwide
Pen Again
Not directly related to EDS, but interesting nonetheless.
EDS NYC member-generated Doctor Map now available to members. Email for access.
