Archive for the ‘Community’ Category
Posted on September 24, 2013
Sixteen-year-old Hannah Alderson is helping to raise funds for Annabelle while promoting EDS Awareness in the UK “A KIND-HEARTED teenager has completed a 10k run with her mum to raise money for a Bury youngster with an incurable and life-threatening condition. Four-year-old Annabelle Griffin, of Wilby Close, Brandlesholme, suffers from life-threatening Vascular Ehlers-Danlos Syndrome (VEDS) which means […]
Posted on September 21, 2013
There are few doctors in Canada treating children with Ehlers-Danlos Syndrome. Unfortunately there is now one less! By: jfrketich@thespec.com “A Hamilton neurologist who was one of the only doctors in Canada to treat children with Ehlers-Danlos syndrome has gone to the United States. Dr. Benedicto (Ben) Baronia’s last shift was Sept. 15 at McMaster Children’s Hospital, […]
Posted on September 20, 2013
An eight-year-old EDS boy’s dream of driving a Lamborghini has come true thanks to the Starlight Children’s Foundation. “Cameron Jones suffers from a complex form of the genetic disorder called Ehlers Danlos Syndrome, where collagen fails to form properly in the body that affects the skin, ligaments, and internal organs. Despite spending a lot of time in […]
Posted on September 18, 2013
EDSawareness.com is excited to be offering this Doctor Speaker Series to our EDS Membership. We are limited in the number of openings so please dial in early (by telephone only) to attend the program. The sessions will be the 1st and 3rd Wednesdays at 9:00 pm EST. Our speaker for September 18 was Dr. Stephane Treyvaud. Dr. Treyvaud is an adult, […]
Posted on September 18, 2013
We were pleased to have Dr. Stéphane Treyvaud present in our EDS Doctor Speaker Series. His presentation aired on September 18, 2013 at 9:00 pm EST. Dr. Treyvaud is an adult, and child and adolescent psychiatrist. He is a fellow of the Royal College of Physicians and Surgeons of Canada, of the equivalent college […]
Posted on September 17, 2013
Ehlers-Danlos Syndrome patients may be sensitive to bruising due to fragile capillaries and blood vessels surrounding the connective tissues. This story tells more about this symptom. by Pavitra Sampath “Mysterious bruises have been appearing on my legs for a while now, mostly on my thighs, but also on my calves. Sometimes they appear and I can […]
Posted on September 15, 2013
John’s mother struggled with pain and was finally diagnosed with Ehlers-Danlos Syndrome. The Ehlers-Danlos National Foundation (EDNF) is pleased to announce that U.S. pairs figure skater John Coughlin has become a public supporter of the organization. Coughlin lost his mother to Ehlers-Danlos Syndrome (EDS) in 2010, and he is committed to raising awareness and increasing support for […]
Posted on June 10, 2013
This EDS Support Group is promoting EDS Awareness in Lancaster. By EMILY PEIFFER Staff Writer epeiffer@lnpnews.com “You may notice something different when you pay for your morning coffee at Turkey Hill. Donation jars for Ehlers-Danlos Syndrome, a rare genetic disorder, are now at the checkout counters of four local Turkey Hill markets. The driving force behind […]
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