Tag Archives: EDS on TV

…you know you’re screwed when yr ailment is the final diagnosis on House….

Evidently Ehlers danlos syndrome was on House MD this week. I’m not a big TV watcher but I’ve seen the show before & thought it was pretty good – I like Sherlock Holmes. House and Wilson are a riff on Holmes and Watson so I was entertained.

I didn’t see the episode but from what I read, it sounds like it was kind of dreadful. Mostly about hoarding & with little explanation of EDS and no mention of the symptoms?

Links:

House M.D. and Ehlers-Danlos Syndrome

discussion @ the site of the Fox network

this physician’s blog thought the medicine in the episode was reasonable. (not surprising to me, given that most EDSers are likely to be misdiagnosed for years & are often not taken seriously by physicians). Misinformation abounds in the comment section, too.

Ehlers-Danlos Syndrome-Deal With It reaction to the show.

The Drama of EDS – The TV Freakshow good overview.

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Ugh this sounds horrible

Sounds like it doesn’t represent chronic pain or EDS very well. As if living with this isn’t hard enough, thanks A&E for twisting the knife, eh?

Press release

A&E NETWORK’S MONDAY NIGHT ORIGINAL NON-FICTION SERIES RETURN BACK-TO- BACK FOR ALL NEW SEASONS ON NOVEMBER 30TH

EMMY-WINNING “INTERVENTION” DEBUTS EIGHTH SEASON AT 9PM ET/PT

NEW HIT SERIES “HOARDERS” RETURNS FOR A SECOND SEASON AT 10PM ET/PT

New York, NY, November 9, 2009 A&E’s 2009 Emmy Award-winner for Outstanding Reality Program “Intervention” and critically acclaimed “Hoarders” return for all-new seasons with back-to-back premieres on Monday, November 30th at 9:00 PM ET/PT and 10:00PM ET/PT.

The eighth season premiere of “Intervention,” features Linda, who after graduating from college found success working as an extra in Hollywood, achieving the glamorous life she always wanted. Linda’s dreams died when she came down with Ehlers-Danlos Syndrome, a rare disorder characterized by joint dislocations. Linda started taking Fentanyl, a painkiller 100 times stronger than morphine. As her painkiller use escalated, she claimed that different sources were causing her pain, including electricity, energy, colors, and even specific people. Despite Linda’s wild claims, her mother clings to the belief that Linda’s pain is real and she must do everything to help her, including depleting the family’s savings and sending her son to be Linda’s caretaker.

“Intervention” is a powerful and gripping series in which people confront their darkest demons and seek a route to redemption. The Emmy and five-time PRISM Award-winning series profiles people whose dependence on drugs and alcohol or other compulsive behavior has brought them to a point of personal crisis and estranged them from their friends and loved ones. Each episode ends with a surprise intervention that is staged by the family and friends of the addict, and which is conducted by one of two specialists: Jeff Van Vonderen and Candy Finningan. Exclusive updated interviews with past subjects from the series first seven seasons are available on AETV.com/intervention.

The series has conducted 143 interventions since its premiere in March of 2005, 111 individuals are currently sober.

The second season premiere of “Hoarders,” the number one freshman non-fiction series on cable among adults 25-54, will introduce Augustine, whose son Jason was removed from her home by Child Protective Services 14 years ago, because of her hoarding. She was never able to clean up enough to have him return. Now, as an adult living on the other side of the country, he is filled with shame and resentment, but unable to turn his back on her. Augustine’s hoarding has become so severe that she has lived without water, gas, heat or appliances for the last four years — bathing only once a week at her sister’s house. Complaints from neighbors have instigated a court ordered clean-up and the city is threatening to condemn her house. Now, “Hoarders” follows Jason as he tries one last time to rescue his mother from the filth he escaped from years ago.

“Hoarders” explores the world of extreme hoarding; a mental disorder marked by an obsessive need to collect things, even if the items are worthless, hazardous or unsanitary. The series takes a fascinating look at the lives of people whose inability to part with their belongings is so out of control that they are on the verge of a personal crisis. Whether they’re facing eviction, the loss of their children, jail time, or divorce, they are all desperately in need of help. The series captures the drama as experts work to put each hoarder on the road to recovery.

Inspired by the incredible response from viewers, individuals and families in recovery to “Intervention,” A&E Network along with leading federal agencies and non-profit organizations launched The Recovery Project. The multi-year, multi-platform initiative was designed to help raise awareness that addiction is a treatable disease and recovery is possible. This past September more than 10,000 people, including individuals and families in recovery, treatment partners and advocates from all 50 states and the District of Columbia, gathered in New York City for a historic walk across the Brooklyn Bridge to symbolize unity and hope for recovery. The walk ended in Cadman Plaza and was followed by a rally featuring public speakers and a performance by Smokey Robinson.

A&E continues to co-host, along with the Partnership for a Drug Free America (PDFA), and leading MSOs such as Time Warner Cable, Cox and Comcast, Intervention Town Hall meetings in cities across the country. The Town Hall meetings offer opportunities for parents, teens, addicts, government officials, health professionals, substance abuse prevention experts and educators to develop a better understanding about the root causes and consequences of addiction.

“Intervention” is produced for A&E Network by GRB. Executive Producers are Dan Partland and Sam Mettler. A&E Executive Producers are Robert Sharenow and Colleen Conway.

“Hoarders” is produced for A&E by Screaming Flea Productions. Executive Producers are Jodi Flynn, Matt Chan and Dave Severson. A&E Executive Producers are Robert Sharenow and Andy Berg.

About A&E Network

A&E is “Real Life. Drama.” Now reaching more than 99 million homes, A&E is television that you can’t turn away from; where unscripted shows are dramatic and scripted dramas are authentic. A&E offers a diverse mix of high quality entertainment; ranging from the network’s original scripted series, to signature non-fiction franchises, including the Emmy-winning “Intervention,” “Dog The Bounty Hunter,” “Hoarders,” “Paranormal State” & “Criss Angel Mindfreak,” and the most successful justice shows on cable, including “The First 48? and “Manhunters.” The A&E website is located at http://www.aetv.com.

Ehlers Danlos Syndrome On Mystery Diagnosis – Full Episode

The full episode of Mystery Diagnosis featuring Ehlers Danlos syndrome is available to watch online thanks to Lynn Sanders. It originally aired on the Discovery Health TV channel.

Also there is an audio podcast: Marfan Syndrome and Cardiac Complications by S. Chris Malaisrie, M.D., Co-Director of the Marfan Syndrome and Related Disorders Clinic, Northwestern Memorial Hospital. It discusses aortic root dilation, heart valve issues, and aortic aneurysms.

Ehlers Danlos syndrome mentioned on CNN

In the article, In tough times, health care considered a luxury, Doug Pegram is interviewed about losing his health insurance and its ramifications for his Ehlers Danlos syndrome.

Video of Mystery Diagnosis with Ehlers-Danlos syndrome

5 minute clip from the Mystery Diagnosis episode with Ehlers-Danlos syndrome.

….UPDATE full version is up now.

From the American Pain Foundation

FOR IMMEDIATE RELEASE
Contact: Tina Regester
Ph:443-690-4707
E-mail: tregester@painfoundation.org

Wisconsin Power Over Pain Action Network Leader to Appear on Discovery Health Channel’s “Mystery Diagnosis”

Baltimore, MD (December 3, 2008) On Monday, December 8, 2008 at 10:00 p.m.(ET/PT), Discovery Health Channel’s “Mystery Diagnosis” will feature Waterford, Wisconsin resident and American Pain Foundation’s Pain Community Advisory Council member and Power Over Pain Action Network leader Lynn Sanders and her fifteen-year struggle to find a diagnosis for her unusual health symptoms.

“Mystery Diagnosis,” which examines the real medical mysteries of patients through personal interviews and reenactments, will lead the viewer step-by-step through Sander’s life beginning at age 15 when she began to experience a deep, nagging pain in her hands during swim practice; her seemingly dead-end journey of enduring endless medical visits and tests; and the day she was finally diagnosed with Hypermobility Ehlers-Danlos syndrome (EDS) when she was 30 years old.

“The American Pain Foundation (APF) is proud of Lynn for all of the hard work she does to educate others about Ehlers-Danlos syndrome, a very painful condition, and how difficult it can be for doctors to properly diagnose and treat EDS,” said Will Rowe, Chief Executive Officer for the American Pain Foundation.

Ehlers-Danlos syndromes are a group of inheritable connective tissue disorders which share common features including easy bruising, joint hypermobility (loose joints), skin hyperelasticity (stretches easily) and weakness of tissues. Individuals with EDS have a defect in the connective tissue that supports many parts of the body including skin, muscles and ligaments. Hypermobility Ehlers-Danlos syndrome affects approximately one in 10,000 people and is the only type of EDS that cannot be diagnosed through skin or tissue samples. Diagnosis is made though clinical observations.

Sander’s segment is also scheduled to air on December 13th at 5 p.m.(ET/PT) and again on December 20th at 9 p.m.(ET/ PT). Check your local cable television listing to locate the Discovery Health Channel in your community.

An active member of APF’s Power over Pain Action Network in Wisconsin, Sanders received American Pain Foundation’s first Patient Advocacy Award in 2007 for her advocacy work on behalf of people in pain based on her personal experience with Ehlers-Danlos syndrome. Sanders also volunteers and serves on the board of directors for the non-profit organization she formed in 2006, Ehlers-Danlos Syndrome Network C.A.R.E.S. Inc. (children, adults, research, education, support).

To learn more about Sanders’s appearance on “Mystery Diagnosis” or to schedule an interview, please contact Tina Regester, the Communication’s Manager at the American Pain Foundation at 443-690-4707 or tregester@painfoundation.org.

# # #

Founded in 1997, the American Pain Foundation is an independent nonprofit 501(c)3 organization serving people with pain through information, advocacy, and support. Our mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management. For more information, visit www.painfoundation.org.

The Pain Community Advisory Council (PCAC) performs as an advisory group to the APF, providing counsel as it strives to improve the quality of life for people of the pain community. This is accomplished by having PCAC members speak directly to the APF about personal pain experiences, providing input on APF initiatives, participating in research and advocating for all constituents on issues affecting the pain community as in keeping with the APF mission.

A project of the American Pain Foundation (APF) The Power Over Pain (POP) Action Network is a developing grassroots network of volunteers who are people with pain, caregivers, and healthcare providers. For more information, visit www.popactionnetwork.org.

Ehlers Danlos Syndrome on TV Dec 8, 2008

I had read on the CEDA list that they are doing an episode on “Mystery Diagnosis” about Ehlers-Danlos syndrome. It’s on the Discovery Health network. My brother David is going to tape it for me. At EDNF I read that the last 30 min is the portion about EDS.

Dec 08, 10:00 pm
(60 minutes)

repeated:
Dec 09, 2:00 am
(60 minutes)

Dec 13, 5:00 pm
(60 minutes)

Mystery Diagnosis: “The Baby Who Wouldn’t Stop Crying”

Baby Averi Williams develops a bluish tint to the whites of her eyes
and a bulging forehead; 15 year-old, Lynn Sanders is leading a normal
life when she begins to experience a deep nagging pain in her hands
during swim practice.

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