Archive for the ‘Community’ Category
Posted on August 17, 2015
Watch this video to learn about local EDS groups.
Do you wish for in-person friendships with EDSers who ‘get it’?
Do you have the desire to form a local EDS group, but are not sure where to begin, or what is involved?
Assuming there are too few EDSers in your small city?
You might be surprised!
Posted on August 10, 2015
This Cincinnati family has 4 members with Ehlers-Danlos. Their strong faith gives them courage to persevere. They believe their childrens’ challenges have helped them to grow and become better people. Amy Schulze and her daughter, Elizabeth, lead 2 support groups for EDSers. By Sue Kiesewetter, Enquirer contributor. FAIRFIELD TWP. – Seventeen-year-old Elizabeth “Wizzy” Schulze used to think being tired […]
Posted on August 8, 2015
You can help this courageous EDS girl have “the best 14th Birthday ever” by sending her a Birthday card. Include your encouragement, motivational songs, or positive story — to show her you understand the struggles of EDS. Her Birthday is August 31st, so get your wishes in the mail! Address provided below. __ Watch Jazzy’s story in […]
Posted on July 31, 2015
By Neil Metcalfe. Hugo Whatton is a 3-year-old with Vascular type Ehlers-Danlos Syndrome. His caregivers must be very cautious in handling him and preventing injuries which could be life-threatening. Kim and Alasdair Hutt of Laurel Avenue, Potters Bar, will tackle a 2.4 mile swim, a 112 mile bike ride and to finish off, they will […]
Posted on July 29, 2015
By Jonathan Rodis.
Edited by Sue Hagen.
Being your own advocate not only improves the quality of your care in the future, but also provides your local caregivers, physicians and hospital staff a better understanding.
Posted on July 28, 2015
By Bill Schu. Many doctors do not understand the clinical significance of joint hypermobility. This has a major impact on accessing appropriate treatments. Mobility is great. Hypermobility? Less great. In the joints, hypermobility leads to musculoskeletal pain – and often times, lots of it. A recent review in the Journal of Pain Research outlined several […]
Posted on July 19, 2015
Lightheadedness and/or fainting spells upon standing are a common symptom of POTS. Not enough blood returns to the heart and brain upon standing, which causes a rapid increase in heart rate called tachycardia. Other symptoms may include chronic fatigue, “brain fog,” and pain
Posted on July 4, 2015
9-year-old Shea has discovered that swimming reduces his EDS pain. Aquatic activity is one of the best exercises for those with Ehlers-Danlos Syndrome. Shea Sargent is only 9-years old, but he’s
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