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Fran Mott has been the Chapter Leader in Michigan for the VHL Family Alliance since 1994. What that means is that she is in charge of taking care of people with von Hippel-Lindau throughout Michigan.
Von Hippel-Lindau (VHL) is a genetic cancer syndrome, caused by one tiny misspelling in one gene, the VHL gene. People who carry this alteration are at increased risk of having one or more tumors in a variety of places in the body. There is currently no magical cure, it's all about watching out for issues, finding them early, and getting the right treatment at the right time.
Fran has worked with physicians at University of Michigan Medical Center and other hospitals throughout the state to become more aware of VHL, diagnose it earlier and more accurately, and help people manage their health. The University of Michigan has created a Clinical Care Center for VHL, part of the CCC program of the VHL Alliance.
Fran is retiring this year after nearly 20 years of volunteer service to her neighbors throughout the state. Joyce speaks with Fran about her experience as a patient herself, a mother, and a volunteer in service to others with this rare disease.
The VHL Alliance will hold its Annual Meeting September 21, 2013, in Ann Arbor, with a dinner September 20 honoring Fran and Dr. James Montie of the U of M.
For information or to register for the meeting, see http://vhl.org/meetings
Maria Hester, M.D., is a physician in the Washington DC area who is committed to patient empowerment.
Through her corporation Savvier Health, she offers on-site workshops at area corporations to improve employeers' "patient skills."
Led by a practicing physician or nurse practitioner, the workshop aims to coach people to become confident health care consumers empowered to help expedite their own care, slash their own (and their employer's) health care costs, and communicate with medical professionals on an unprecedented level. Participants learn: - Invaluable 'patient skills' that will change their approach to health care forever - How to expedite their own diagnoses - Ways to slash their medical bills - How to get the most out of each and every doctor's appointment - Why many people are admitted to the hospital unnecessarily - How to make each hospitalization safer - How to minimize visits to the doctor - The ABC's of effective patient-doctor communication - How to decrease the risk of a medical error - Valuable tools to help them navigate the medical system - Tips to live longer, healthier lives - The basics of medical decision-making - How to prepare for medical visits in advance
Her blog, "Teachable Moments," is carried in nationally recognized e-Hospitalist News, which is dedicated to teaching other physicians ways to empower their patients. Her book "Your Family Medical Record: An Interactive Guide to Getting the Best Care" was Published by John Wiley & Sons, Inc. in 2000.
Karen Mercereau is a nationally recognized visionary leader in healthcare, known for her ability to transcend challenges, and create opportunity from complexity. This was the quality behind her founding of RN Patient Advocates in 2002, for which she received a Purpose Prize Fellowship. A clinical RN for 45 years in diverse intensive care as well as community health settings, Karen was also integral in developing the first hospice in Tucson, AZ. Recognizing the dearth of public health programs available in the AIDS community in the late 1980’s, she chaired a countywide consortium to develop AIDs relief programs in Tampa Bay. Karen has also been instrumental in the design and implementation of hospital and health care systems, lecturing nationally on their wider applications. Currently, Karen heads the RN Patient Advocate Learning Intensive in association with the University of Arizona College of Nursing. This immersion learning program for qualified clinical RNs prepares them for the development of their own practices as independent RN Patient Advocates (iRNPAs).
Karen is also the leader of the RN Patient Advocate Group Practice in Southern Arizona comprised of independent RN Patient Advocates who provide both individual RN Patient Advocate services as well as community health literacy programs. She is the President of Health Education and Advocacy Leaders, Inc., a foundation she started to support community health literacy programs.
Joyce is traveling to ten cities in September and October. Mike interviews her about who she saw, what she did, and what she learned.
Sept 20-21, Ann Arbor, Michigan
Sept 28, London, England
Oct 5-8, Budapest, Hungary
Oct 10, Oxford, England
Oct 12, Cardiff, Wales
Oct 13-15, Belfast, Northern Ireland
Oct 17, Dublin, Republic of Ireland
Oct 23, Nottingham, England
Oct 24, Birmingham, England
Oct 27, Manchester, England
For more details, see http://www.facebook.com/vhlfa/events
See also Blog Posts at http://www.powerfulpatient.org/blog
Truvio Emphasizes the Importance of Patients' Voices
A conversation with WEGO Health CEO Jack Barrette and Fabio Gratton, co-founder and CEO of Vocalize, about Truvio, a new mobile-based market research tool that brings patient opinion leader insights to life with data visualizations and audio commentary.
Find more information about this podcast here.
I am happy to announce that Pat Rullo is returning to the show to discuss patient safety issues. Pat is the author of Speak Up and Stay Alive an amazing book and manual on staying alive and being safe in the hospital. Her book is the story of her journey while caring for her mother in the hospital. She learned very quickly that even with the best doctors and nurses, patients could still be a risk for falls, infections and misdiagnosis.
Pat is now an expert in all things patient safety related. She has dedicated her life to getting the information to everyone. Beside her book, and many lectures, she is host of the Patient Safety Radio Show, a weekly show heard live in Phoenix and Cleveland areas. Recorded episodes can be downloaded at www.patientsafetyradio.com
Pat is relentless in pursuing areas of safety that many people aren't aware of. Today's show will include not just her story but a look at the issues of increased exposure to radiation from CTs,Xrays and cell phones. I know if Pat is concerned, so should I. Listen in folks. This is one show you will want to take notes!
Presented below is a Transformative Health interview with Patrick Coonan, dean of the College of Nursing and Public Health at Adelphi University. Patrick talks about the changing nature of nursing, the role technology plays and the biggest changes he sees coming soon to the delivery of care.
This vitally important show is a continuation of last night's SPECIAL REPORT on the life & untimely death of Coalinga State Hospital (CSH) resident Isidro "Cedro" Zavala Torres--simply Cedro Zavala to fellow CSH residents.
According to witnesses, Cedro Zavala--who was a wheelchair-dependant Mentally Disordered Offender--was violently attacked by approximately 10 CSH Staff/Department of Police Services (DPS) Officers on June 24. The incident began when Zavala refused to go to a medical appointment. Then, after he was forcibly removed him from his wheelchair & thrown to the ground, an aggressive officer allegedly stood on Zavala's neck w/ his heavy steel-toed boot.
Witnesses theorize Zavala's larynx was crushed by this blow. As he gasped for air, officers launched him back into his chair, threw a towel over his face & rushed him away. Isidro Zavala Torres, 30, died a short time later.
Sadly, this is one very serious incident in a long history of violence/intimidation against patients. CSH News has heard too many horror stories--the nightmare must end. No more statements from CSH Director Audry King saying this/that is a "serious issue," then doing nothing about it. CSH must pay for their crimes against the elderly & infirmed. It's time California's "Money Pit" stopped wasting billions in taxpayer money locking up men who've finished their prison terms. It's time everyone involved stood before CA taxpayers--and a jury of their peers--to be held accountable for what they've done.
Listeners, tune in as we discuss horrifying patient abuse/elder abuse that's been swept under the rug - until now..
in Self Help
Help Your Doctor Help You! Know The Questions To Ask! So you've just been diagosed with an illness...Now what?
Do you just passively take whatever the doctor says and follow it to the letter?
Or are you proactive and ask a lot of questions?
It's really challenging when we're first diagnosed with an illness, any illness, to move from fear and panic mode, where we feel like a victim - and then act like a victim by doing as we're told! - to taking charge of our own journey back to health.
However, my patients learn to ask me questions, to partner with me on their journey back to health. We also discuss what they need to ask their MD, and the other members of the medical team they're working with on other aspects of their treatment protocol.
Often all we need is a little guidance as to what specific questions to ask. And since this has been the most frequently asked question this week in the emails I've received from you, as well as on Facebook, "The Dr Marilyn Joyce Show" is going to arm you with some of the most important questions to ask. Get your pens and paper ready!
After the show drop on over to Dr Marilyn Joyce on Facebook at: http://www.facebook.com/DrMarilynJoyce, LIKE the page (if you haven't already) and leave your comments and questions. Your input is the critical foundation of the show!
Need more guidance and mentoring, start by getting your Kick Cancer In The Can™ free starter toolkit at http://www.KickCancerInTheCan.com
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