Among Ourselves

LISTEN 29 min

What do people with disabilities talk about when no able-bodied person is in the room?

Starring Kris Yates & Mary Ann (Tidwell) Boussard

A scene from the original play, Blind Man’s Bluff: Our heroine Geri interviews for a job at the Independent Living Center.

Also starring Doyle Saylor, Leah Gardner, Jan Santos & Patty Nash.

From the memoir of the same name by Geri Taekens.

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"I wanted to be the innkeeper where people could come and sit by the fire and tell stories."

Stephanie Sugars talks about a community of 200-350 people who live with Peutz-Jeghers Syndrome, a rare genetic disease. She facilitates the on-line group.

Photo courtesy Stephanie Sugars

The Peutz-Jeghers Syndrome E-group
Hosted by ACOR

Stephanie's peutz-jeaghers syndrome Resource List

Original air date: 4-10-10

Blind Man's Bluff

LISTEN
Air date: April 16, KPFA. 94.1 fm, www.kpfa.org

Original drama, Blind Man's Bluff,
Starring Kris Yates & Mary Ann (Tidwell) Boussard

Adapted from Geri Taecken's memoir of progressive blindness and coming of age in the disability movement.

A poignant, funny story
produced by a team of people
with disabilities
(and one able bodied engineer).

Original book cover

Cast

Geri ... Kris Yates .
Cheryl ... Mary Ann (Tidwell) Boussard .
Airline Steward ... Ammy Joseph .
Ticket Agent ... Shelley Berman
Conductor ... Doyle Saylor
Cliff ... John Healy
Nina ... Leah Gardner
Helpful Man & Bus Driver ... Patty Nash
Incidental Characters: Jan Santos, Adrienne Lauby, & Leah Gardner

Engineering by Lamont Young
Screenplay by Leah Gardner & Adrienne Lauby
Direction by Shelley Berman & Leah Gardner
Audio Editing and Sound Effects by Greeta Ahart & Adrienne Lauby
'Diary' music by J.S. Bach played by Ayaka Isono

Thanks to the Shoestring Radio Theater for sound effect assistance.

Author Geri Taeckens uses her website to raise money for health care for service animals. You can read all her adventures in her memoir which is available through her website, locally at Waldon Pond Books, or at the usual on-line booksellers.

Photo of Geri & her dog

poster for the broadcast

PJS/JPS Resource List

Provided by Stephanie Sugars

* June 26, 2010, PJS Meet & Greet in Santa Rosa, California. Details at: http://pjsmeetandgreet.blogspot.com/

* For researchers of the PJS gene, LKB1, there is a conference titled "The Tumor Suppressor LKB1" From Basic Science to Clinical Applications" in Marseille, France June 24, 25 & 26, 2010. More information at http://www.lkb1.com/

* Peutz-Jeghers News blog by Stephanie Sugars - http://peutz-jeghersnews.blogspot.com/

* Updated & revised listserv for people with PJS and JPS (juvenile polyposis syndrome). The affected, family, friends, medical professionals and researchers are welcome to join the free online support group http://listserv.acor.org/archives/pjs.html If email volume is a problem, join digest mode for one daily email. Or go nomail to search the archives as needed. If you'd like to join & need help, please write to Pj4steph@aol.com

* New screening guidelines for PJS and Juvenile Polyposis Syndrome from National Comprehensive Cancer Network at http://www.nccn.org/about/news/newsinfo.asp?NewsID=227 (free registration required). These are different and more up-to-date than the attached guidelines.

Also available at http://img.medscape .com/pi/editoria l/articlecme/ 2009/712885/ Colorectal_ Cancer_Screenin_ g_V.1.2010_ Medscape. pdf

* Trouble with bowel preps - Fleet Phospho-Soda and the pill preps (Visicol and Osmoprep) have caused harm to patients - read more about FDA warning at http://www.webmd.com/digestive-disorders/news/20081211/black-box-warning-for-bowel-prep-drugs

* PJS in the news - June 2009. This story is about mice, not people. And no, these drugs aren't currently available to PJS human patients, though there is a small trial of them in Utah & Hawaii (see below). And the suggested FDG-PET scans for screening have several drawbacks including accuracy, expense & radiation exposure. Still, it's interesting that mouse PJS polyps show increased glucose metabolism. The PJS gene LKB1 affects both metabolism and cancer risk. Press release: http://www.eurekalert.org/pub_releases/2009-06/si-hc061209.php Free full text article: http://www.pnas.org/content/106/27/11137.long

* Psychosocial impact of Peutz-Jeghers Syndrome - free full text report

http://www.springerlink.com/content/l7217g4u05u81651/fulltext.pdf

* PJS people - photos, locations and comments, add yourself at http://www.frappr.com/pjspeople

* How to have a PJS-free baby. This is a report that I wrote for the PJS Online Support Group (http://listserv.acor.org/archives/pjs.html). Posted at http://peutz-jeghersnews.blogspot.com/.

* Genetic mosaicism has now been described in PJS people. This is something patients and family members should discuss with genetic counselors…but they don't have the information yet. Posted at http://peutz-jeghersnews.blogspot.com/

* A 50+ page report from Mayo Clinic on PJS, appropriate for patients, family, doctors and genetic counselors at http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=famcan or at pjsinfo.com

* Recent addition to the above resource - Peutz-Jeghers syndrome in Children and Adolescents by Warren Hyer at http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=famcan

* Peutz-Jeghers Syndrome and Management Recommendations. This 2006 article from Johns Hopkins includes suggested screening for PJS people & at-risk family members. Click on full-text pdf for free full text.

http://www.cghjournal.org/article/PIIS1542356505010931/abstract?source=aemf

* 2007 Medscape article on PJS & similar polyposis syndromes www.medscape.com/viewarticle/561747

* 2009 eMedicine article on PJS

http://emedicine.medscape.com/article/182006-overview

* 2006 Frequency and Spectrum of Cancers in the Peutz-Jeghers Syndrome. Click on full-text pdf for free full text. http://clincancerres.aacrjournals.org/cgi/content/full/12/10/3209

* The Genetest PJS entry is good to share with medical professionals. Also includes genetic testing laboratories. http://www.genetests.org/

* The new genetic test method, MLPA, has increased the accuracy of genetic testing. Those with previously negative or inconclusive test results may wish to be retested. Labs are listed at the genetests.org website.

* Learn more about the PillCam for small bowel imaging at givenimaging.com

* Learn more about double balloon enteroscopy, a new surgical method and get referrals to doctors who use it at www.fujinonendoscopy.com This method allows the entire small bowel to be scoped and replaces major and endoscopic surgery in some PJS patients.

* Olympus has developed a similar method called single balloon enteroscopy. www.olympusamerica.com/

* There is a third type of enteroscopy called spiral enteroscopy that has been used in PJS patients. http://www.spirusmed.com/enteroscopy.html

* There's a very small chemoprevention clinical trial for PJS people. Participants must live in Utah or Hawaii. This trial uses the rapamycin analogue RAD001 to target mTOR, a downstream target of the PJS gene LKB1. Link to trial information

http://clinicaltrials.gov/ct2/show/NCT00811590

* A list of many laboratories providing genetic testing for PJS is available at http://www.ncbi.nlm.nih.gov/sites/GeneTests/lab/clinical_disease_id/21338?db=genetests

* Genetic testing is available (no travel necessary) through Professor Rodney Scott, Division of Genetics, Hunter Area Pathology Services, John Hunter Hospital, Lookout Road, New Lambton, NSW 2305 Australia. Check with Dr. Scott for cost Rodney.Scott@newcastle.edu.au

* A Funny Polyp Study for those with unexplained polyposis. Please have your medical care professional contact them for more information www.lerner.ccf.org/gmi/research/funnypolyp

* Johns Hopkins in Baltimore, MD also has a pancreatic cancer screening study called CAPS4 that is open to PJS participants http://clinicaltrials.gov/ct2/show/NCT00714701

* H. Lee Moffitt Cancer Center in Tampa Florida also has a pancreatic cancer screening study http://www.moffitt.org/site.aspx?spid=CABF01C1E2F4447983BDD663F9FAAC09 Here's an article by the study's principle investigator, Dr. Klapman www.moffitt.org/moffittapps/ccj/v15n4/pdf/280.pdf

* Dr. Stratakis continues to study PJS patients in Bethesda, MD, USA http://clinicaltrials.gov/ct/show/NCT00001452?order=2

* European laboratories, research studies and information

http://www.orpha.net/

* For more resources, go to peutz-jeghers.com

* There are many new articles on PJS and the PJS gene LKB1 or STK11 available at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

* Many free, full-text, old articles on PJS are available at

www.jeghers.com/pj_pubmed.aspx

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ONLINE SUPPORT GROUPS - INHERITED CANCER SYNDROMES

PJS & Juvenile Polyposis

http://listserv.acor.org/archives/pjs.html

Sindrome de Peutz-Jeghers en Espanol

sindromedepeutzjeghers@googlegroups.com

http://groups.google.es/group/sindromedepeutzjeghers?hl=es

Peutz-Jeghers syndrome in China

subberry@gmail.com

HNPCC

http://health.groups.yahoo.com/group/HNPCC/

FAP/Gardner syndrome

http://listserv.acor.org/archives/fap-gs.html

Gardner

http://health.groups.yahoo.com/group/gardnerssyndrome/

Li-Fraumeni

http://listserv.acor.org/archives/li-fraumeni.html

Colon Cancer

http://listserv.acor.org/archives/colon.html

Cowden/PTEN

http://health.groups.yahoo.com/group/cowdensyndrome/

Stephanie Sugars

pj4steph@aol.com

Intersexuality

Listen 29 min

Caster Semenya photo by Andy Lyons/Getty Images

Olympic runner, Caster Semenya, showed up to race in Stellenbosch, South Africa, this week and the International Association of Athletics Federations (IAAF) wouldn't let her run because she is alleged to be an intersex person.

Hida Viloria, the spokesperson for human rights from Organisation Intersex International (OII). and

photo courtesy Hida Viloria

Curtis Hinkle,
the organization's founder, join us to talk about their petition in support of Semenya and bring us some of the complexity behind these news headlines.

Organisation Intersex International believes that intersex is not primarily a medical condition. They say intersex children should not be subjected to surgery and hormones without their consent -- unless there is a critical need.

With active affiliates in six continents, OII creates community and activist support across cultural and language barriers.
Eddie Ytuarte and Adrienne Lauby host this mind-expanding discussion.