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Proof of EDS? (via DarkWaterfall) What better way to return...

Mon, 23 Mar 2009 12:03:12 -0400

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.

Rare Disease Day - February 28, 2009

Thu, 26 Feb 2009 17:58:15 -0500

Sign the petition to help give visibility to rare disorders.

"The brain of a chronic pain patient is not simply a healthy brain processing pain information, but..."

Wed, 25 Feb 2009 23:51:58 -0500

“The brain of a chronic pain patient is not simply a healthy brain processing pain information, but rather is altered by the persistent pain in a manner reminiscent of other neurological conditions associated with cognitive impairments.”

- “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.”

Beyond Feeling: Chronic Pain Hurts the Brain, Disrupting the Default-Mode Network Dynamics — Baliki et al. 28 (6): 1398 — Journal of Neuroscience

Lift For Life event- March 7th at Colgate University to benefit the EDNF: http://tinyurl.com/b7yt84

Wed, 25 Feb 2009 14:41:25 -0500

Lift For Life event- March 7th at Colgate University to benefit the EDNF: http://tinyurl.com/b7yt84

Colgate University Athletics - Football Team To Hold Lift For Life Event On March 7

Wed, 25 Feb 2009 12:40:00 -0500

Colgate University Athletics - Football Team To Hold Lift For Life Event On March 7:

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...

Sun, 22 Feb 2009 21:14:56 -0500

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.

"On a recent visit to her new spacious and cozy home, however, Mrs. Frisch’s words and laughter..."

Sun, 22 Feb 2009 12:09:36 -0500

“On a recent visit to her new spacious and cozy home, however, Mrs. Frisch’s words and laughter came fast and freely, showing no noticeable effects of Ehlers-Danlos Syndrome, the rare illness that weakens her body’s soft tissue and veins.”

- 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.

adaptinstyle: PEN AGAIN the name of this product says it all—it...

Fri, 20 Feb 2009 14:08:00 -0500

adaptinstyle:

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 also makes markers & children’s pens. Worth a try!

For Uninsured Young Adults, Do-It-Yourself Health Care - NYTimes.com

Thu, 19 Feb 2009 12:40:39 -0500

For Uninsured Young Adults, Do-It-Yourself Health Care - NYTimes.com:

Not directly related to EDS, but interesting nonetheless.

EDS NYC member-generated Doctor Map now available to members. Email for access.

Tue, 17 Feb 2009 21:27:04 -0500

EDS NYC member-generated Doctor Map now available to members. Email for access.

"The doctor said, ‘You wouldn’t live through a major accident because you would bleed to death, and..."

Sat, 14 Feb 2009 22:58:46 -0500

““The doctor said, ‘You wouldn’t live through a major accident because you would bleed to death, and if you were lucky enough to live from the operation, you might die from infection’””

- The Times West Virginian - ‘I’m afraid not to exercise’

This article focuses on the role of exercise in cardiovascular health. They interviewed an EDS patient who had suffered a heart attack at 53, followed by a rupture during pacemaker installation. Though the writer (erroneously) underestimates the role of Ehlers Danlos in heart complications, EDS patients can read between the lines here. They don’t tell us we need regular echocardiograms for nothing.

EDS NYC is now on Facebook: http://apps.facebook.com/causes/220438 (thanks to @shangsm)

Sat, 14 Feb 2009 21:04:47 -0500

EDS NYC is now on Facebook: http://apps.facebook.com/causes/220438 (thanks to @shangsm)

Our Firstgiving page has been updated! Follow this link to donate directly to EDS NYC:...

Sat, 14 Feb 2009 19:02:50 -0500

Our Firstgiving page has been updated! Follow this link to donate directly to EDS NYC: http://www.firstgiving.com/edsnyc

Flashback: EDS local news segment.

Fri, 13 Feb 2009 21:22:50 -0500

Flashback: EDS local news segment. :

A few years back, one of our members approached a local news affiliate about doing a segment on EDS. The above link is not the original news item, but the video is available there and worth a watch. In addition to being a vocal advocate for Ehlers-Danlos Syndrome, Gerri is the Executive Director of Special Citizens, an organization supporting those dealing with autism.

Join the EDS NYC community on Change.org: http://tinyurl.com/b2n6vb

Mon, 09 Feb 2009 20:05:43 -0500

Join the EDS NYC community on Change.org: http://tinyurl.com/b2n6vb

EDNF Pediatric One-Sheet available here: http://tinyurl.com/alac8n

Sun, 08 Feb 2009 13:54:20 -0500

EDNF Pediatric One-Sheet available here: http://tinyurl.com/alac8n

Connecting people dealing with Ehlers Danlos Syndrome / EDS.

Sun, 08 Feb 2009 13:07:18 -0500

Connecting people dealing with Ehlers Danlos Syndrome / EDS.

"Patients with joint hypermobility problems should even avoid activities like bowling, which involves..."

Sun, 08 Feb 2009 12:52:45 -0500

“Patients with joint hypermobility problems should even avoid activities like bowling, which involves lifting heavy bowling balls and locking the elbow and shoulder joints.”

- Using Physical Therapy to Treat the Joint Hypermobility of Ehlers-Danlos Syndrome

Cursory, but links to good sources for additional information.

Ehlers-Danlos Syndrome: Diet Considerations

Sun, 08 Feb 2009 12:30:50 -0500

Ehlers-Danlos Syndrome: Diet Considerations:

One patient’s take on the incredibly complex nutritional difficulties we face.

Hypermobility increases risk of osteoporosis | The Philippine Star

Sun, 08 Feb 2009 11:12:00 -0500

Hypermobility increases risk of osteoporosis | The Philippine Star