Posts Tagged ‘Dealing with EDS’

Practical Parenting Tips for those with Physical Limitations

Posted on September 20, 2012

by Jennie Macdonald  As someone who suffers from two chronic illnesses (Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome) that include fatigue and joint pain as my two major limitations, I understood the extreme need to be efficient with my time and energy in my early years of parenting. For me, a main priority was to […]

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Diagnosed with EDS, Now What?

Posted on September 7, 2012

By Amy L. Schulze “This is a set of advice that was compiled by a group of patients. It is meant to help with issues other than the formal medical advice you will receive from various doctors and therapists. Do not take this advice for something other than friendly advice from those that have more […]

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Welsh Teenager Describes Her EDS Pain

Posted on August 28, 2012

Phoebe Bruce helps spread EDS awareness by explaining her painful EDS symptoms to the media. Constant dislocations makes it difficult to cope with what should be simple and routine daily activities. The Huffington Post reports her story: “The teenager from Wales has a rare genetic condition called Ehlers-Danlos syndrome which means the collagen in her […]

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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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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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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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