Monthly Archives: December 2008

hand pain


hand pain
Originally uploaded by jdybka

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Made some pain art

Chronic Pain

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Give me a doctor by W. H. Auden

Give me a doctor partridge-plump,
Short in the leg and broad in the rump,
An endomorph with gentle hands
Who’ll never make absurd demands
That I abandon all my vices
Nor pull a long face in a crisis,
But with a twinkle in his eye
Will tell me that I have to die.

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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