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Preview: MedWorm: Ehlers-Danlos Syndrome

MedWorm: Ehlers-Danlos Syndrome News



MedWorm.com provides a medical RSS filtering service. Thousands of medical RSS feeds are combined and output via different filters. This feed contains the latest news in Ehlers-Danlos Syndrome



Last Build Date: Fri, 19 Jan 2018 17:30:18 +0100

 



Ehlers-Danlos Syndrome: Woman starts hospital navigation website

Wed, 27 Dec 2017 00:09:29 +0100

A woman starts a website to help disabled people navigate hospitals and flag up their facilities. (Source: BBC News | Health | UK Edition)

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Woman with Ehlers Danlos needs £130k to live to Christmas

Mon, 23 Oct 2017 12:21:11 +0100

Sarah Gearing, 40, from Rochford, Essex, suffers from Ehlers Danlos syndrome, which makes her body's connective tissues collapse and has left her in constant pain. (Source: the Mail online | Health)



NHS patients having to crowdfund their own WHEELCHAIRS

Mon, 26 Jun 2017 16:10:46 +0100

Hannah Barham-Brown, 29, from London, was diagnosed with Ehlers Danlos-Syndrome , which means her joints dislocate very easily. She had to raise £2,000 to buy a wheelchair. (Source: the Mail online | Health)



Minnesota woman with saggy skin wants to become a model

Thu, 22 Jun 2017 13:20:14 +0100

Sara Geurts, from Minneapolis, Minnesota, suffers from  Dermatosparaxis Ehlers-Danlos syndrome, a genetic condition that affects 'every system in the body'. (Source: the Mail online | Health)



Plymouth woman had 24 operations on her dislocating joints

Fri, 19 May 2017 10:22:19 +0100

Rebecca Hempsell, 40, from Plymouth, has Ehlers-Danlos syndrome, which affects the connective tissues that supports her skin, bones, blood vessels and other organs in her body. (Source: the Mail online | Health)



Milton Keynes family at risk of dislocating their bones

Wed, 19 Apr 2017 15:33:35 +0100

EXCLUSIVE: Gemma Coles-Hassan, 34, from Milton Keynes, was diagnosed with Ehlers-Danlos syndrome age 11. She passed it onto her three children: Aydan, Theo and Maddison. (Source: the Mail online | Health)

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Beauty queen uses platform to bring attention to rare genetic disorder

Wed, 19 Apr 2017 00:11:13 +0100

Victoria Graham, 23, of Maryland, is using her platform as Miss Frostburg 2017, to bring attention to a rare genetic disorder she has called Ehlers-Danlos Syndrome. (Source: ABC News: Health)



Scars on stage

Mon, 27 Mar 2017 23:39:38 +0100

US beauty queen Victoria Graham has Ehlers-Danlos Syndrome (EDS) but isn't afraid to show her scars. (Source: BBC News | Health | UK Edition)



Angry Constituents Hammer Tom Cotton At Town Hall: 'Do Your Job'

Thu, 23 Feb 2017 01:38:40 +0100

Sen. Tom Cotton (R-Ark.) faced hundreds of angry constituents at a town hall Wednesday night who grilled him for two hours on the Affordable Care Act, immigration, President Donald Trump’s administration and other issues.  The town hall, held at a high school in Springdale, Arkansas, was raucous throughout. About 2,000 people packed the auditorium and frequently drowned Cotton out with cheers, boos and jeers. Some attendees waved red cards when the senator said something they didn’t agree with.  Look at this crowd at @SenTomCotton's town hall in Springdale tonight. #ARnews #ARpx pic.twitter.com/sDQ2SKMXCG— Greg Leding (@gregleding) February 23, 2017 The uproar hit a peak when a 25-year-old constituent pressed the senator on whether he intends ...



Leah Boxall suffers from Ehlers-Danlos Syndrome and needs money for life-saving surgery

Wed, 14 Dec 2016 16:55:33 +0100

Leah Boxall, 34, from Southampton, cannot turn her head without dislocating her neck and is partially paralysed. She suffers from a condition that has left her spine and neck too weak to support her head and her brain is now slipping into her spinal column crushing her brain stem. (Source: the Mail online | Health)



7 Ways To Show Real Support To Friends And Family Battling Health Issues

Tue, 01 Nov 2016 04:01:02 +0100

“Please let me know if you need anything … ” We’ve all said the same thing to friends or loved ones when they were ill and in need of support. Blogger Judy Schwartz Haley, who was diagnosed with stage 3 breast cancer when her daughter was an infant, heard it a lot.  “I received many well wishes and blanket invitations to ‘call me if you need anything,’” she recalled. “But that’s a hard offer to follow up on. It meant I still had to pick up the phone to call someone and ask for help. I’m still not very good at that.” When someone you love is battling illness or injury, it’s normal to feel like you’re not doing enough to help him or her. We partnered with Dignity Health to give you seven tangible ways ...

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Ehlers-Danlos Syndrome Linked to Small-Fiber Neuropathy Ehlers-Danlos Syndrome Linked to Small-Fiber Neuropathy

Thu, 29 Sep 2016 14:28:53 +0100

Dr Argoff highlights new evidence on the potential mechanisms underlying these painful inherited disorders.Medscape Neurology (Source: Medscape Neurology and Neurosurgery Headlines)



Student with EDS needed EIGHT operations now hopes to be crowned Miss America

Wed, 08 Jun 2016 13:45:28 +0100

Victoria Graham, 22, from Maryland, has had several surgeries to try to stop her brain from crushing her spinal cord after being diagnosed with Ehlers-Danlos Syndrome (EDS). (Source: the Mail online | Health)



Well: Think Like a Doctor: Hurting All Over Solved

Fri, 04 Mar 2016 20:04:21 +0100

Readers solve the case of a 36-year-old man with a 20 year history of migrating joint pains along with other strange symptoms. (Source: NYT)



Darcey Kelly 'can't have sex without dislocating hip' due to condition

Thu, 25 Feb 2016 01:53:14 +0100

Darcey Kelly from London, has Ehlers-Danlos Syndrome, an agonising condition which causes her joints to pop out. It means she can't open a bottle of water without dislocating her wrist. (Source: the Mail online | Health)



Mother-of-two who can't EAT because of Ehlers-Danlos Syndrome (EDS)

Tue, 09 Feb 2016 15:25:55 +0100

Saffron Taylor, 22, from Birmingham, has Ehlers-Danlos Syndrome (EDS). The condition makes her joints dislocate at the slightest touch and meant she needed screws inserting into her knee. (Source: the Mail online | Health)



Headaches, bloating and fatigue? You may have Ehlers-Danlos syndrome (EDS)

Tue, 12 Jan 2016 05:36:56 +0100

For 20 years, GP Kate Barnes now 52, from Buckinghamshire, has lived with chronic headaches and pain. Two years ago she found out she has Ehlers-Danlos syndrome (EDS). (Source: the Mail online | Health)



Teenager with curved spine fulfills her dream of performing on a trapeze

Mon, 23 Nov 2015 13:34:22 +0100

Louise Stewart-Scott, 14, of Jersey, has Ehlers-Danlos syndrome, causing hypermobility and her joints to dislocate. She also suffers from scoliosis, an abnormal curvature in her spine. (Source: the Mail online | Health)



Ehlers-Danlos syndrome(s) mimicking child abuse: is there an impact on clinical practice? - Castori M.

Wed, 14 Oct 2015 12:28:41 +0100

Ehlers-Danlos syndrome is a heterogeneous group of heritable connective tissue disorders characterized by increased fragility of various non-ossified tissues. It is usually ascertained due to abnormal skin texture, scarring complications, vascular fragilit... (Source: SafetyLit: All (Unduplicated))

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Teenage girl had to be wired together before she fell apart

Tue, 23 Jun 2015 04:42:19 +0100

Emily James, 17, from Salford, has Ehlers-Danlos syndrome which causes her joints to dislocate several times a day, leaving her in constant pain. (Source: the Mail online | Health)



How Do You Diagnose Hypermobility?

Mon, 23 Feb 2015 00:18:35 +0100

Discussion Hypermobility can be seen in several different clinical entities. These include generalized joint hypermobility, joint hypermobility syndrome, Marfan syndrome, Ehlers-Danlos syndrome and Osteogenesis Imperfecta. For adults, a Beighton score of at least 4 or 5 is used as a definition of hypermobility. For children a score of 5 or 6 is used as a definition. (see scoring system below). Generalized joint hypermobility is hypermobility with few or no symptoms. If they occur, knee symptoms are the most common. Joint hypermobility syndrome has hypermobility along with other symptoms such as pain, reduced muscle strength, and decreased proprioception and balance. Joint hypermobility syndrome is diagnosed by: 2 major criteria 1 major criteria and 2 minor criteria 4 minor criteria 2 m...



Unexplained facial scar: child abuse or ehlers-danlos syndrome? - Abtahi-Naeini B, Shapouri J, Masjedi M, Saffaei A, Pourazizi M.

Sat, 27 Dec 2014 05:43:12 +0100

CONTEXT: Child abuse is a serious problem, and its physical manifestations can be mimicked by certain diseases and conditions. These conditions can include genetic, congenital and other disorders that may result in poor weight gain, bone fractures or skin ... (Source: SafetyLit: All (Unduplicated))



Mother of five has dislocated every bone in her body and even yawning isn't safe for her 

Sat, 27 Dec 2014 01:35:24 +0100

Jojo Meadows, 38, from Hereford, suffers from Ehlers-Danlos Syndrome a rare condition which causes her bones to dislocate up to a whopping ten times a day. (Source: the Mail online | Health)



Mother and daughter share disorder, help others

Thu, 25 Sep 2014 20:23:16 +0100

Brandy Gibson and her 5-year-old daughter, Amelia, share the same connective tissue disorder called Ehlers-Danlos Syndrome, which affects the joints and organs. They have started a new project that helps raise awareness for the syndrome. (Source: Health News: CBSNews.com)

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Ehlers-Danlos syndrome (EDS): Signs, Symptoms, Prevention and Coping

Sat, 30 Aug 2014 19:07:56 +0100

Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that affect a person’s connective tissues, mainly their joints, skin and the walls of their blood vessels. Connective tissue is a complex mixture of proteins and other substances that provides elasticity and strength to the underlying structures of a person’s body. People who experience Ehlers-Danlos syndrome (EDS) usually have overly flexible joints and skin that is fragile and stretchy. The skin issue may become a real problem if a person with EDS has a wound that requires stitches for example because their skin is often times not strong enough to hold the stitches. (Source: Disabled World)



Teenager diagnosed with rare condition that causes her to collapse 'like JENGA'

Tue, 12 Aug 2014 14:49:16 +0100

Shannon Blastland, 15, from Grimsby, suffers from the rare condition Ehlers-Danlos Syndrome, which affects the collagen in her body. (Source: the Mail online | Health)



Make-up artist, 30, has shrunk 1.5 inches in a year due to Ehlers-Danlos syndrome

Thu, 13 Mar 2014 17:51:10 +0100

Nina Parsons, from Staffordshire, has Ehlers-Danlos Syndrome, which weakens the collagen in her body. Her neck is also not strong enough to hold up her head, causing her brain stem to become crushed. (Source: the Mail online | Health)



Generation jitters: are we addicted to caffeine?

Fri, 07 Mar 2014 14:22:56 +0100

Caffeine is the drug many of us can't live without – but do you have any idea how much is in your daily hit?Propped up on my desk before me, there is a vacuum-sealed bag of white powder. Chemists would recognise this substance as a methylated xanthine, composed of tiny crystalline structures. It is a drug, and I have been under its influence nearly every day for the past 25 years. It is caffeine, and in moderation it makes us feel good. But it is a drug whose strength is consistently underestimated. You'd need to down about 50 cups of coffee at once, or 200 cups of tea, to approach a lethal level of caffeination – but if you go straight for the powder, you can get a lot very quickly.On 9 April 2010, 23-year-old Michael Bedford was at a party near his home in Mansfield. He ate...

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Website Helps Patients Solve Medical Mysteries

Fri, 07 Feb 2014 04:22:27 +0100

NEWBURYPORT (CBS) – Only a few years ago dancing, art, and music came easy to Diana Cleaveland. Now the 51-year-old Newburyport mom struggles to sit up. “It’s really, really horrific,” says Diana as she describes the excruciating pain in her neck and back. Diana has been diagnosed with Ehlers-Danlos Syndrome. It’s a complicated genetic condition that weakens connective tissue leaving the patient in constant pain. But, Diana is convinced something else is wrong. “I’ve been diagnosed with contradictory things depending on which doctor you talk to.” Desperate for answers, Diana posted her case on the new website CrowdMed.com. “We’ve had some pretty dramatic success stories. In some cases we’ve solved a case in just a few weeks ...



Ehlers-Danlos Syndrome

Fri, 20 Dec 2013 07:00:00 +0100

Title: Ehlers-Danlos SyndromeCategory: Diseases and ConditionsCreated: 12/31/1997 12:00:00 AMLast Editorial Review: 12/20/2013 12:00:00 AM (Source: MedicineNet Arthritis General)



Mother with rare Ehlers-Danlos syndrome struggles to cuddle her children because her joints 'pop out'

Tue, 26 Nov 2013 12:04:29 +0100

Emily Comber (pictured with husband, James), 31, from Cornwall, has Ehlers-Danlos syndrome - a genetic condition which means the collagen in her body is too weak. (Source: the Mail online | Health)



Joanne Teague lives for decade after 2 year prognosis

Mon, 07 Oct 2013 13:34:57 +0100

Joanne Teague, 50, from South Wales, has Vascular Ehlers-Danlos syndrome which means her blood vessels and organs are in danger of tearing. (Source: the Mail online | Health)



$1 million gift to fund Ehlers Danlos syndrome research at BCM

Wed, 14 Aug 2013 05:00:00 +0100

Baylor College of Medicine geneticist Dr. Brendan Lee plans to use a new $1 million gift to gain understanding of Ehlers Danos syndrome, an incurable tissue disorder. (Source: Baylor College of Medicine News)

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What Causes Constipation?

Mon, 25 Feb 2013 00:32:39 +0100

Discussion Constipation generally is defined as infrequent or painful defecation. Constipation can be very disturbing to the patient and family who believe the stools are too infrequent, too hard or too difficult to pass. Most children develop constipation after the child begins to associate pain (e.g. a hard bowel movement) with defecation. The child then begins to withhold the stools trying to decrease the defecation discomfort. As stool withholding continues, the rectum dilates and gradually accommodates with the normal defecation urge disappearing. Passing large hard stools infrequently reinforces the defecation pain. The cycle continues. If the cycling is severe enough, worsening stool retention and more abnormal defecation dynamics occurs. Chronic rectal distension results in both lo...



Father who lived with rare disease for 40 years finally diagnosed after doctor see him tie his shoelaces

Wed, 23 Jan 2013 16:36:51 +0100

Butcher Ian Redfern was with his daughter Evie at The Children’s Hospital in Sheffield, for treatment for her condition Ehlers Danlos Syndrome, when he was diagnosed. (Source: the Mail online | Health)