Family with Humor and Faith Managing Their Ehlers-Danlos Syndrome

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 […]

Join Effort by Sending a Birthday Card to Jasmine, Turning 14 with Ehlers-Danlos Syndrome

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 […]

Triathletes Face Ironman Test to Help Boy with Ehlers-Danlos Syndrome

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 […]

Being Your Own Advocate for Your Rare Health Condition

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.

Lack of Clinical Understanding about Hypermobility Conditions and Treatment

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 […]

A Neurological Disorder Known as POTS Can Cause Dizziness and Fainting

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

Shea overcomes Ehlers-Danlos Syndrome in the Pool

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

Trevor will be Riding 100 miles to Raise Cash for Hypermobility Association

Trevor Sleeman will be riding his bicycle to raise awareness and funds for the Hypermobility Association. [Halstead Gazette] Trevor will take part in a 100-mile bike ride to raise money for people with a painful medical condition after his wife was diagnosed with it. Trevor Sleeman (pictured), 49, will take part in the Prudential 100 bike […]