Art, music & dance Nov 21, 2008
Come out and support Lorelei Klasner, who is suffering from Ehlers-Danlos Syndrome, a genetic connective tissue disorder that affects 50,000 Americans. The goal is to help offset incurred expenses owing to her illness. (Seacoast New Hampshire)
Local woman hopes life of pain can educate about rare disease Oct 20, 2008
Neumann has a rare, inherited disease called Ehlers-Danlos Syndrome ... She believes her role undergoing rare procedures is to help doctors to learn so they can better treat other Ehlers-Danlos Syndrome patients who wouldnt be able to take the pain ... All failed because she had Ehlers-Danlos Syndrome and doctors didnt know it. (The Pantagraph newspaper)
Cobb officer a vital link between department, Hispanic community Oct 18, 2008
His wife, Jennifer, died five years ago of a rare disease called Ehlers-Danlos syndrome, a genetic disorder caused by a defect in protein. Both his daughters suffer from the disease. (Atlanta Journal-Constitution -- Metro)
Sick and ignored: our medical shame Sep 7, 2008
She said patients and families affected by conditions such as fibrodysplasia ossificans progressiva, in which muscles and tissues turn into bone, and Ehlers-Danlos syndrome, which creates "rubber people", generally fall into social, health and funding gaps because their numbers don't demand attention. "Researchers have told us that rare diseases miss out because it's hard to get government grants and pharmaceutical companies don't make money of out these diseases," she said. (Sydney Morning Herald -- Australia)
How to talk to your doctor about chronic pain Aug 14, 2008
She has Ehlers-Danlos syndrome, a rare genetic tissue disorder that leaves her with chronically painful joints. "If you say, 'it's really depressing and upsetting me; I'm in so much pain,' " Buckley said, "doctors will see it in terms of emotion and treat it as an emotional problem, referring you to psychiatric care or antidepressants.". (CNN)
Savannah smiles Jun 14, 2008
"Ehlers-Danlos syndrome is a hereditary connective tissue disorder, and it affects the collagen in your body, so you basically have faulty collagen," Fleeman explained. "That means not only does it affect the skin and the joints, it also can affect your lungs and your stomach, and your GI tract, your heart, basically pretty much anything inside of you." The most common form of EDS affects around one in 10,000 to one in 15,000 people, according to MayoClinic. (Fairfield Daily Ledger, IA)
Community news May 2, 2008
The branch is participating in the 2008 campaign that recognizes May as Ehlers-Danlos Syndrome Awareness Month. For more information, call Hunter Foster at 227-4113, visit www. (The Daily Reflector)
What is Ehlers-Danlos Syndrome? Mar 25, 2008
What is Ehlers-Danlos Syndrome ... What is Ehlers-Danlos Syndrome ... What is Ehlers-Danlos Syndrome. (Suite101.com)
A piece of me Mar 24, 2008
Kathaleen Hoffman's daughter, Kelly, was born with a connective tissue disorder called Ehlers-Danlos syndrome, which causes her bones to break easily. Born with dislocated hips, she had to undergo the surgical insertion of plates and screws when she was just 1 year old. (Albany Times Union)
It wasn't business as usual Oct 21, 2007
That same disorder, called Vascular Ehlers-Danlos syndrome for those Google-happy readers, is what makes me prone to arterial dissection, in case anyone is wondering why an otherwise healthy 27-year-old woman has to be flown two states away for medical treatment. Over the week I was in the hospital, the dissection neither got better nor worse, a good indication that it'll heal on its own without turning into an aneurysm or something equally unpleasant. (Bismarck Tribune, ND)
2 terminally ill Montana residents sue state in right-to-die casePosted on Oct. 19 Oct 20, 2007
The suit was brought by Robert Baxter, 75, a retired truck driver from Billings who suffers from lymphocytic leukemia; and Steven Stoelb, 53, a former logger and forest technician from Livingston who has Ehlers-Danlos Syndrome, a connective tissue disease caused by a defect in the body's ability to produce collagen. They were joined by four Missoula physicians who treat terminally ill patients - Stephen Speckart, C. Paul Loehnen, Lar Autio and George Risi Jr. - and a nonprofit patients' rights... (Missoulian, MT)
Screening For Fragile Skin In Sheep Aug 4, 2007
White Dorper breeders and owners are hoping to eradicate a genetic disorder causing a lethal fragile skin condition among some of their drought-hardy flocks. Dermatosparaxis most often affects lambs. (Science Daily)
Aortic Dissection Jul 14, 2007
Certain inheritable conditions involving weakening of connective tissues, like Marfan's syndrome and Ehlers-Danlos syndrome, are also risk factors. Aortic dissection can happen to anyone, though it is seen more in males and people aged 40 to 70 years. (Suite101.com)
Connective Tissue Disorders Feb 24, 2007
Collagen Disorders and Their Causes. Up until the late 70 s, most systemic or rheumatological autoimmune diseases were referred to as connective tissue diseases or collagen diseases. (Suite101.com)
Stretchy Face: 'Circus of Horrors' Star Jan 24, 2007
Garry "Stretch" Turner has a rare genetic disorder called Ehlers-Danlos syndrome ... Ehlers-Danlos Syndrome ... Turner suffers from an extreme case of Ehlers-Danlos syndrome, a rare genetic disorder that can severely weaken a person's joints, blood vessels and in Turner's case, skin. (ABC News)
