Velo-Cardio-Facial Syndrome

Powerful Patient, 2008 Week 44

Joyce Graff, host, on webtalkradio.net

Beginning October 27, 2008

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Program guide for this show

Velo-Cardio-Facial Syndrome is the second most common chromosomal abnormality, second only to Downs Syndrome, and yet it is still widely misdiagnosed.  Dr. Priscilla Cogan talks with Joyce about VCFS, about her book The Unraveling Thread, about post-traumatic stress, and about American Indian medicine.

About Our Guest

Author of internationally acclaimed novels, Winona's Web, Compass of the Heart, and Crack at Dusk: Crook of Dawn, Priscilla Cogan, Ph.D., is a clinical psychologist of Irish-American descent and a practitioner of Native American pipe and sweat-lodge ceremonies. She lives with her husband, Duncan Sings-Alone, a Cherokee storyteller, writer, and healer, and two Shelties betwixt and between rural Massachusetts and the Leelanau Peninsula in northwest Michigan.

Her books are warm, funny, and healing.  Winona’s Web is being made into a major motion picture.

Dr. Cogan speaks with Joyce about VCFS, about post-traumatic stress, and about maintaining our balance in health, as seen through American Indian medical tradition.

About The Unraveling Thread

An exciting new novel by award-winning author, Priscilla Cogan.  Dr. Cogan has won the Small Press Award for Fiction, And The Body Mind Spirit Award.  Her books have been presented by the Book Of The Month Club and have been published in ten languages around the world.

Where is Mary Poppins when you really need her?

Divorced Harriet McWhinnie returns home from her high finance job to discover that the newest Agency person has fled the house, leaving Harriet's young son in the care of her demented (and naked) mother, her teenage adolescent twins (one psychotic, one not) screaming at each other, and a dog that's bonkers. Desperate, she hires Agatha, a middle-aged Native American woman, with a mysterious past and a commanding presence. Such are the tangled threads Cogan weaves in The Unraveling Thread, illustrating both the family ties that bind and the family binds that tie us all to Home.

Requiem for Locusts, a new book by Wendy Parciak, the sister of a woman with VCFS, also deals with VCSF in a novel.  http://www.twocanoespress.com/   

About Velo-Cardio-Facial Syndrome

Information from the VCFS Educational Foundation, http://www.vcfsef.org      
VCFS -- also known as 22q11.2 deletion syndrome, Shprintzen Syndrome, DiGeorge Sequence and, regrettably, Catch 22 -- is caused by the deletion of a small segment of the long arm of chromosome 22 (specified as 22q11.2 deletion), and is one of the most common genetic disorders in humans. Velo-Cardio-Facial syndrome is characterized by cleft palate, heart abnormalities, learning disabilities, and over 180 other clinical findings. Please see the VCFS Fact Sheet for details.

Because the symptoms can vary widely, it is often misdiagnosed, or goes undiagnosed.  The Unraveling Thread depicts some of the challenges of diagnosing and treating a person with VCFS.

Information from the National Institute on Deafness and other Communication Disorders http://www.nidcd.nih.gov/health/voice/velocario.asp

About Dr. Cogan’s multi-cultural healing practice

For over forty years, Duncan Sings-Alone has been a healer, first as a minister, then as a psychologist. After intensive training in Lakota medicine/spirituality from 1976-83, he became known in the Native American community as a teacher, ceremonialist, and storyteller. Widely respected as a healer and teacher, Sings-Alone is enrolled in the Georgia Tribe of Eastern Cherokee Indians. Duncan Sings-Alone was the founder of the Free Cherokees, an intertribal cultural organization for all people interested in exploring Native American spirituality. An author (Sprinting Backwards to God) and elder, he also holds a Ph.D. in Counseling and Psychology (University of Florida).

Free Cherokee, http://www.freecherokee.org/  

Two Canoes Press, http://www.ipne.org/pub-TC.htm 

Other Books by Priscilla Cogan

Her novels explore cultural differences in perspectives on life and death and healing, achieving balance in life and with the natural world.

Winona’s Web – Cogan weaves an incandescent web of archetypal themes through the contrasting life visions of Lakota, psychological, and Christian perspectives.  From such different viewpoints, healing comes in a journey of discovery.

Compass of the Heart – Trickster psychology.  Helping parents learn to forgive themselves for the mistakes they have made.

Crack at Dusk, Crook of Dawn – Hawk, the Medicine Man and Maggie, a woman psychologist, are a couple working to help a boy.   Hawk feels “his soul has been stolen,” and Maggie believes he has post-traumatic stress disorder.

Double Time - In an attempt to win back his wife's love, unemployed Billy T. Pickle decides to rob a bank. Things don't go too well, as he first hands over his wife's shopping list, then finds his car vandalized and undrivable. Thinking quickly if not clearly, Billy grabs a teenage runaway as hostage, then carjacks a car driven by an elderly woman. The three of them make their escape from Washington D.C., but Billy has no idea where to go next.   Cogan mixes a wry sense of humor with a touch of angst to hook the reader and keep us reading.