Monday, February 27, 2012

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

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.

Saturday, February 18, 2012

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.

Saturday, February 11, 2012

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.

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?