Archive for the ‘Latest Updates’ Category

Em Made it to the Conference!

Posted on August 21, 2012

We wrote about Em before the EDNF Learning Conference in Cincinnati, Ohio. She is a very brave young lady. Her mother tells us how she is doing. “But, my kid is pretty amazing. Growing up is challenging under the best of circumstances – adding to that mix complicates things exponentially. Em has had a rough […]

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EDNF announces plans for EDS Registry, Research & Clinical Care Center

Posted on August 9, 2012

The EDNF announced that it will be forming an international research registry! We will be asked to  donate blood and/or tissue samples to help in the effort. In addition, plans are underway to found an EDNF Clinical Care and Research Center! The location of the proposed center has not been determined; several institutions are being considered. […]

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EM didn’t miss the EDNF Learning Conference!

Posted on August 1, 2012

The EDNF Learning Conference in Cincinnati, Ohio will be a rewarding experience for all who can attend. Even if traveling is a challenge, it is definitely worth it.  This EDS family anticipates going to the conference, and shares their perspective in a personal blog. “Been awhile since I posted, so I thought I would do a […]

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Elhers-Danlos Syndrome and its Diagnosis

Posted on July 28, 2012

Ehlers-Danlos Syndrome is a painful disability that requires a different lifestyle. The first challenge is the diagnosis. Ehlers-Danlos Syndrome is actually a group of genetic disorders that cause problems with a patient’s connective tissues, according to Dr. Salman Kirmani, an expert on EDS at the Mayo Clinic. Collagen and other proteins in the connective tissues […]

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Reducing Pain and Effort in the Kitchen

Posted on July 14, 2012

EDSers are often frustrated with kitchen implements – they may be ineffective, difficult to use, or downright painful! Opening jars, bottles and cans are high on the list of complaints. Slicing, peeling, and cutting with knives is often painful. Lifting heavy pots, especially those with long handles, create torque on the wrist that makes it […]

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Former Competitive Gymnast Shares Ups and Downs of EDS

Posted on July 12, 2012

Former competitive gymnast, J Murphy, continues her challenges with Ehlers-Danlos Syndrome. She has had several surgeries and shares her experiences with EDS.  Recently, she celebrates that she is brace-free for the first time in 3 years! “My symptoms haven’t changed. My headaches are still bad but there is not much I can really do about it […]

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Athlete with Ehlers-Danlos Syndrome

Posted on July 4, 2012

This is an interview with a Paralympic Swimmer who has EDS.  EDSer Nancy Burpee is interviewed by Faye Rapoport. Many EDSers struggle to maintain an exercise program. Frequent acute injuries prevent us from exercising routinely.  Swimming is one of the best sports for EDS because the water’s bouyancy reduces the weight on our unstable joints. We can […]

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Teenager Excels Despite Ehlers-Danlos Syndrome

Posted on June 10, 2012

Many people diagnosed with Ehlers-Danlos Syndrome look healthy. Most appear to be athletic, and they are intelligent and motivated to accomplish much in their lives. Melissa Rose is just that type of person.  The reality is that this disability is challenging and can definitely slow you up. “Fatigued hands, sore joints, back pain, easily bruised […]

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