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)
Local group continues fight for awareness Oct 27, 2006
Saturday night, the Piedmont Triad Branch of the Ehlers -Danlos National Foundation (EDNF) celebrated ten years of supporting each other and working to raise awareness of Ehlers-Danlos Syndrome in the community and among healthcare professionals ... Saturday night, the Piedmont Triad Branch of the Ehlers -Danlos National Foundation (EDNF) celebrated ten years of supporting each other and working to raise awareness of Ehlers-Danlos Syndrome in the community and among healthcare professionals. (Yanceyville Caswell Messenger, NC)
Warning raised on genetic disorder Aug 24, 2006
Patients with Loeys-Dietz are often misdiagnosed as having Marfan's syndrome , known for causing a lankiness like that of Abraham Lincoln, or the vascular disorder called Ehlers-Danlos syndrome, the researchers said ... Since the syndrome was identified ``we've learned that cardiovascular surgery is very safe and therefore you should be very aggressive about going in and repairing these aneurysms before they rupture," Dietz said. ``In contrast, in people with vascular Ehlers-Danlos syndrome, you... (Boston Globe -- Nation)
Aneurysm Syndromes Caused by Mutations in the TGF-β Receptor Aug 24, 2006
In view of the phenotypic overlap between this syndrome and vascular Ehlers Danlos syndrome, we screened an additional cohort of 40 patients who had vascular Ehlers Danlos syndrome without the characteristic type III collagen abnormalities or the craniofacial features of the Loeys Dietz syndrome. Results We found a mutation in TGFBR1 or TGFBR2 in all probands with typical Loeys Dietz syndrome (type I) and in 12 probands presenting with vascular Ehlers Danlos syndrome (Loeys Dietz syndrome type... (New England Journal of Medicine)
Largest review of Loeys-Dietz Syndrome to date Aug 24, 2006
The work, published August 24 in The New England Journal of Medicine, closely compares patients having one of two types of the lesser known Loeys-Dietz syndrome or Ehlers-Danlos syndrome with better-understood Marfan syndrome ... Marfan and Ehlers-Danlos syndromes both are similar heritable conditions with overlapping symptoms that affect the connective tissue, the tissue that holds the body together ... "This study shows that both clinical and molecular analyses can distinguish patients with... (EurekAlert!)
A child's determination Aug 6, 2006
Chelsey has a form of Ehlers-Danlos syndrome, which is a group of disorders that affect connective tissues. Fewer than a dozen cases of her form of the disease, dermatosparaxis, have been reported worldwide. (Pensacola News Journal)
A zebrafish screen for craniofacial mutants identifies wdr68 as a highly conserved gene required for Endothelin-1 expression Jun 8, 2006
We also identified zebrafish models for Campomelic Dysplasia and Ehlers-Danlos syndrome. To further demonstrate the utility of this method, we include a characterization of the wdr68 gene. (BioMed Central)
Parents' dilemmaA couple with a disabled child consider having another baby Apr 27, 2006
Morgan has a rare and serious genetic condition called Ehlers Danlos Syndrome (EDS). Wanting to have a child is a very strong emotion. (BBC News -- Health)
