Library Exhibit Highlights Those Living With Chronic Pain

marfan syndrome uk logo squareIn 2009, photographer and Ehlers-Danlos Syndrome survivor, Syd London, had an idea for a photo documentary that she entitled,INvisible Project. It was her vision to bring public visibility to the experiences and strengths of those living with pain. This project compares the fragility of the physical body with the resilience of the spirit that holds onto hope, by highlighting the day-to-day experiences of 15 chronic pain survivors through photographs. With support from the CT Pain Foundation, Syd London followed each person for one day, capturing the struggles and triumphs of the pain survivors, including Hillsborough resident and business owner Stephen G. Brilliant.
“For 12 years I have lived with a chronic neurological pain condition in my left ankle known as Reflex Sympathetic Dystrophy Syndrome or Complex Regional Pain Syndrome (RSDS or CRPS),” Brilliant said. “Whether it’s running my business, cutting the grass, coaching my kids or traveling with my family, the pain is always there—but most people just think I don’t like to wear shoes.”

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SL mom creates beach glass jewelry in support of son with Marfan Syndrome

tonyaMost mothers will do anything for their children. When Tanner Hoops was diagnosed at the age of 3 with Marfan Syndrome, mom Tonya Archer, after finding him a team of doctors that knew how to treat the condition, immediately became involved with the Heart of Iowa Chapter of the National Marfan Foundation and raising funds to help spread awareness for this disorder.
One way in which Tonya has done so is to design, create and sell wonderful jewelry from beach glass, from shells and coral, from turquoise, and giving from 50 percent to 100 percent of her profits to the foundation.

“I just wanted Tanner to know he was not in this by himself,” she said.

Tanner, a senior this year at Storm Lake High School, appreciates his mom’s involvement with the foundation and is quick to say how awesome her creations are.
Marfan Syndrome is a disorder of connective tissue – that which holds all parts of the body together and helps control how the body grows. Because connective tissue is found throughout the body, Marfan Syndrome features can occur in many different parts of the body.

Read More: Pilot Tribune

ILC tries to fill the gap in youth chronic pain cases

Brooklyn_and_AutumnDiagnosed with Ehlers-Danlos Syndrome in 2009, Oakville’s Brooklyn Mills became the inspiration behind the ILC Foundation — nearly three years later, the organization has made it its mission to help children across Canada suffering from all chronic pain disorders.

The driving force behind Improve the Life of Children (ILC) is the need to help the little ones and adolescents, and their families, with chronic pain diseases who fall through the cracks when it comes to getting the treatment they so desperately need.

Read More: Inside HALTON

Woman with Elhers-Danlos syndrome dislocates jaw eating ‘triple-patty’ burger

A woman almost bit off more than she could chew at a burger restaurant when she was left nursing a dislocated jaw.

Woman dislocates jaw on burgerNicola Peate, 25, had to have her jaw put back into place by medics after it locked while she was attempting to get her teeth around a “triple-patty” burger at a Liverpool restaurant.

The social media manager initially tried to laugh it off when the incident happened during a work night out at Almost Famous, on Parr Street, Liverpool.

After her fiance, Neil Docking, finished the remainder of the “Kids in America” burger, containing pretzels and candied bacon, the pair made their way home – oblivious to the seriousness of the injury.

But by the time Peate, from Ormskirk, Lancashire, arrived at work the next day the pain had become unbearable.

She said: “I didn’t think I’d dislocated it – you don’t expect it to happen eating a burger! But I tried to eat it with a knife and fork and couldn’t. I couldn’t open my mouth fully.

Read More: The Guardian

Riding around Australia for charity

CLAIRE HealeyCLAIRE Healey will cover thousands of miles around Australia in a bid to help others battling the condition that has given her thousands of dislocated joints.

Leaving Sydney on September 1, the Ride Around Australia for Ehlers Danlos Syndrome organiser and leader will circumnavigate the country in 35 days to raise money and awareness. Ms Healey, a Sydney-based information technology executive, will pass through the Hunter on her first day with her support team, which includes her father, prominent Newcastle barrister Terry Healey.

Ehlers Danlos Syndrome is a genetic condition that creates faulty collagen and leaves her joints unstable and fragile, among other symptoms.

Read More: The Herald


A disabled woman has revealed how her super smart canine companion has saved her from a life of agony and despair.

QUIZZY THE WONDER DOGSue Holmes, 46, from Eaglesfield, near Cockermouth, suffers from an excruciating condition called Ehlers–Danlos syndrome.

The hereditary illness is so severe that it leaves her bedridden for long periods.

She uses either crutches or a wheelchair, and suffers from regular dislocations, torn muscles and painful spasms.

She wears body braces to support her joints.

There was even talk of putting her into a nursing home at the age of 44.

But a year ago, along came her unlikely saviour in the guise of a friendly retriever called Quizzy.

The former staff nurse’s four-legged friend can open doors, take the card and cash out of an ATM, and even takes clothes out of the washing machine.

Read More: Times & Star

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

marfan-syndrome-uk-logo-square150HOUSTON — (August 14, 2013) — With a new $1 million gift, Baylor College of Medicine geneticist Dr. Brendan Lee hopes to broaden understanding of the mechanisms of Ehlers Danlos syndrome, an incurable, inherited connective tissue disorder in which the body does not make enough collagen, resulting in weakened tendons and ligaments and ultimately poor skin healing and hypermobile joints.

Given by Dr. And Mrs. David Ott, the gift will establish the Pamela and David Ott Fund for Heritable Disorders of Connective Tissue and Ehlers Danlos syndrome (EDS).

Read More: BCM