A 'Spaghetti Dinner' Raise Funds For Michgan Teen Suffering From Ehlers-Danlos

TUSCOLA COUNTY, MI — Another heart-wrenching story of survival, as a community center hosted a "spaghetti dinner" to aid 17-year-old Ehler-Danlos sufferer, Haley Jenkins in her struggle with the disease. Perhaps, some Michigan billionaires such as the DeVos Family, the Ilitich Family, or Gov. Rick Snyder could see fit to find Hayley and her family some assistance in getting her to the Ehler-Danlos specialists at Johns-Hopkins. Or, perhaps CBS, the television network affiliated with the TV station employing her parent, might consider a "Sixty Minutes" piece detailing the struggles some many sufferers--and their families--face daily.... just a thought.

Help Meredith! South Carolina Community Raising Funds to Help Teen!

Greer, South Carolina — A small town community has come together to help raise funds to train a service dog for Meredith Butenhoff, a 14-year-old Ehlers-Danlos sufferer. The Greenville News writes:

[Meredith] was 11 when doctors diagnosed her with Ehlers-Danlos Syndrome, a genetic connective tissue disorder that causes joint hypermobility and chronic pain in the limbs and joints.

For those with EDS, sudden movements can mean a dislocated shoulder. Sneezing can pop a rib out of place. And there’s the pain, a deep-throbbing ache like fibromyalgia that never goes away.

The pain and dislocations have forced Meredith, an eighth-grader at Riverside Middle School, to replace basketball and competitive swimming with trips to specialists, physical therapy, pain medication, wheelchairs, casts and slings.

“There’s been good days and bad days,” Meredith said. “There’s a lot of things that normal kids would do — like go to high school football games and things like that — that can be difficult for me.”

Three years ago, only close friends and family knew about Meredith’s diagnosis until the Butenhoffs learned about Palmetto Animal Assisted Life Services, or PAALS.
Based in Columbia, the nonprofit group trains service dogs for clients ranging from the wheelchair-bound to children with autism and disabled veterans.

For Meredith, who can get dizzy just standing up, a service dog would mean a constant companion that could carry her books at school, help her open doors and support her while she walks.

“This dog will really be personalized to Meredith to be exactly what she needs,” said her mother, Tracy Butenhoff.

 We encourage readers with the resources to help to visit http://www.helpmeredith.com.

A special note to both the Gannett, the publisher of the Greenville News.  This is an instance where your new subscription paywall inhibits your ability to nationalize your story. Limiting the "readers comments" to subscribers only, restricts the ability of readers outside of your area from helping to support a worthy cause. Few people will subscribe to the online version of a newspaper if they are far outside the local area. The Complainer makes a really good argument that Gannett's national paywall initiative is doomed to failure.

Ehlers-Danlos Pain Drives Former Male Model to Suicide

London — We are saddened by the premature death of Dorian Thomson, 41, a former male model and art director whose suicide was blamed on unrelenting dental pain due to EDS.

The Daily Mail reports that Mr. Thompson's orthdontic treatment of six years ago, triggered pain so severe that he was unable to eat or sleep properly.

According to the Daily Mail:

He was in 'more pain than anyone could ever conceive of for about six years', he added, and 'in addition to his tooth ache from every single tooth he suffered from Temporomandibular joint disorder. It meant that there was no support from his jaw and the jaw joint had been worn down.'
By the time of his death, he said, Mr Thomson had become antisocial thanks to 'the onslaught of pain'.

He described his body as feeling like it 'had pins in it' when he walked, which would cause 'grievous amounts of pain'.

He told the inquest Mr Thomson, who turned on the Regent Street Christmas lights in 1999, had spoken about contacting Swiss assisted dying group Dignitas.
'Given the degenerative nature of his condition and the complete lack of help that he was being given, he wanted to know that there was a way out,' said Mr Illingworth.
Recording a verdict of hanging, adding that Mr Thomson killed himself 'while his mind was disturbed', Coroner Dr William Dolman said he was 'a man suffering from a number of serious medical problems.

He had the genetic disorder EDS and the orthodontic treatments had not been successful.
'He was a man in severe, constant pain for many years... He clearly had been a highly successful, outgoing man, but retreated into himself... he had issues with the unsuccessful treatment he had with orthodontics.'

He added: 'This intelligent man knew he had come to the end of his tether. A man with no way out of his predicament but to end his life.'
Mr Illingworth said outside court Mr Thomson had undergone treatment to realign his jaw.

He said: 'The EDS was triggered by orthodontic treatment and when that went wrong the orthodontist dumped him and refused to deal with him anymore. Other orthodontists were refusing to treat him and his condition deteriorated.

'We believe there is systematic failure in the knowledge of EDS. We have to improve knowledge of it and get testing for it before orthodontistry or any form of surgery. That was Dorian's wish, that nobody should ever go through it again.'

His partner of 12 years, Susan Millard, 48, added: 'I want to raise awareness of this. If any person can be prevented from going through what he went through it is worth it.'

This story highlights the need for greater awareness within the medical and dental communities to the challenges caused by Ehler-Danlos.

WOW! Super-Duper Service Dog Does the Trick(s) for Ehlers-Danlos Patient!

WOW! No, "WOW!!!!!!!!!" Byron, a seven-year-old Golden Labrador service dog, no SUPER DOG, really does the trick(s) for Ehlers-Danlos sufferer Kate Cross. 

From making her bed to grocery shopping, and even using the ATM, "Bryon" anticipates what appears to be almost every need for her 49-year-old human companion.

And, for Ms. Cross, whose Ehlers-Danlos affects the entirety of her body, from hypermobile joints to poor circulation, Bryon has most surely be a "lifesaver" to the previously home-bound woman.

According to Ms. Cross, a former school teacher, "Byron knows more than 100 different commands, and can do just about anything I ask him too."

As she makes a morning coffee, Byron will open the fridge door himself, before fetching Kate a carton of milk. And the clever canine even retrieves his own breakfast bowl from the cupboard, before jumping up and placing his empty dish in the washing up when he's done. He accompanies Kate to the supermarket, reaching down to low shelves to pick up any item Kate has on her shopping list. And to the envy of dog owners everywhere, Byron can even open the door to let himself out to the toilet.

Trained by Canine Partners of Sussex UK, this heroic super dog makes the day-to-day activities that can be brutally challenging for those severely impacted by Ehlers-Danlos not only possible, but also fun.

"In the supermarket, I stop my chair near to the item I want, and he follows my eyeline and takes the item off the shelf. It’s such a help to me, as small things like bending down and grasping things are really difficult for me....  Byron even unloads my shopping onto the conveyor belt at the till and hands my purse over to the checkout assistants."

Not content to simply located and load Ms. Cross's groceries, Byron can pay for them, as well!

"He can do such amazing things - he takes my bank card and reaches up to put it into a cash machine, and takes the cash when it comes out, and passes it to me - all I have to do is put in my pin number."

There is no task too big or too small for Bryon.

"He can reach out and press pedestrian crossing buttons with his nose, and picks up anything I drop on the ground. Before we go to bed on cold nights, he even fetches my hot water bottle, and when I’ve filled it, he trots upstairs with it, and puts it on my side of the bed, under the covers.....My condition means my circulation is very weak, so a nice warm bed is just what I need."

Kudos to Canine Partners for providing Kate Cross with a new, more productive way of life. And, a giant bone to "Lord" Byron, who certainly deserves knighthood for his outstanding achievements. Our question is: How can we get more "Byrons" to the thousands who suffer the debilitating effects of Ehlers-Danlos each day?h day from the UK to the USA?

Disabled Britons Harness Twitter to in Effort Stop Welfare Cuts

LONDON — Writing in The Guardian, Patrick Butler's "How the Spartacus welfare cuts campaign went viral" profiles the successful social media campaign of several disabled activists who are forcing Great Britain's conservative government to rethink plans to slash welfare and health funding. 
     EDS-survivor Kaliya Franklin and co-founder of the "the #spartacusreport Twitter storm" argues:

...it was the internet, blogs and Twitter that enabled disabled people to get their voice heard, unmediated by traditional media. "None of this would have happened without social media. The campaign has been done by people mostly from their beds. We would not have been able to find each other had we not had access to social media."

Butler's profile of Franklin and her fellow activists reveals:

Franklin also hosts a successful blog – Benefit Scrounging Scum – where some of her made-for-YouTube videos have become cult viewing (her "shame on you..." message to David Cameron marked the beginning of the Spartacus campaign in October 2010). One clip records her putting the Labour leader Ed Miliband on the spot at last year's Labour party conference, with Franklin's eloquence about politicians' toxic use of "benefit scrounger" rhetoric contrasting with the awkwardness of a surprised Miliband.

....Law graduate Franklin, 36, was not disabled as a child. She had planned to join the army before an accident, while teaching in the US after university, exacerbated existing inherited health problems. At 28, she was diagnosed with Ehlers-Danlos syndrome. Symptoms include joint hypermobility and arthritis, and she has serious and persistent health and mobility problems. "Since October, I do not think I have been out of my pyjamas for more than a handful of days," she says.

The importance of DLA for Franklin is that it helps her to live independently. Despite her mobility and health difficulties, she is not eligible for social care support, having been assessed as requiring only "moderate" needs. She has been refused an NHS wheelchair, and relies heavily on a support network of friends and neighbours to help her.

One of the problems, she says, is that despite years of underfunding for adult social care, people assume the state's support for disabled and chronically sick people in receipt of DLA is much more comprehensive than it is, and that "we all have a nice bungalow and an adapted car".

Despite their success, the Spartacus campaigners are already counting the personal cost to their health. Some, already ill, have retired exhausted.

Our kudos to Patrick Butler and The Guardian for strong coverage of government efforts to balance the UK's budget on the broken backs of its most vulnerable citizens.

Ehlers-Danlos Survivor Doing 'God's Work'

Talladega, AL — Reporter Elsie Hodnet of The St. Clair Times does an excellent job profiling EDS survivor Lexie Smith in truly comprehensive story of personal triumph in challenging physical circumstances.
     Ms. Smith, who suffers from a combination of the both the classical vascular types of EDS, appears to have made phenomenal use of service dogs, deals with chronic pain through extensive online ministry to fellow sufferers.

No Fear: Britons Fight Back Against Prying, Misinformed Eyes

London — In an effort to resolve its budget crisis, the UK has instituted a policy which encourages citizens to report disabled people who "appear" to be doing more than their disability might allow, never forgiving that a wheelchair-bound EDS sufferer might, occasionally enjoy a brief walk or a breezy trip down a slide. Writing in The Guardian, advocate Lucy Glennon posits that the policy is narrow-minded and deeply misinformed. We agree.