WHAT'S NEW AT THE PNA
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Message From The Founder:
We Are Gaining On It
By Robert Knutzen
One of the greatest disappointments we have experienced over the past 17 years has to do with numbers. I’m referring to the number of patients, tumors and surgeries, plus the cost of care and social services, not to mention the cost and losses to employers, marriages, etc. Our intense interest in numbers stems from one simple fact: all services, care, research, media attention, physicians’ interest and so on are accelerated or slowed down based on the numbers. (Watch the American election races. Numbers are everything!)
We are told that by classifying pituitary patients and their diseases/disorders as rare, the government (and society) is doing patients a favor. After all, members of the research community get a tax break on their work (which obviously makes them happy). However, no one seems to stand up for us, the patients, aside from the PNA. It is remarkable that diseases like HIV/AIDS, breast cancer and others are counted, treated and assigned “importance” or preference based on numbers. The research dollars and treatment options multiply every year. Sympathy, pity (self and otherwise) flow freely and the kind hearted (and blindsided) public and politicians and the “system” lavishes these relatively common and well-known diseases with research, expertise and a never-ending stream of money.
Pituitary disorders, however, are treated with some disdain and skepticism even by so-called experts, who often without a shred of evidence declare pituitary tumors/diseases to be “rare” and almost always benign. This is rubbish and cannot be supported in any scientific arena.
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Governmental agencies and a small number of “self-anointed” thought leaders in endocrinology are successfully guiding measly research monies into their own institutions where only their world view is permitted.
The truth is finally being recognized: scientists/researchers are now speaking out on a daily basis about the approximately 60 million Americans, plus 20% of the world’s population that harbor pituitary tumors. The symptoms seem to vary enormously from patient to patient, and in some cases doctors arbitrarily declare that the patient has no symptoms, even when he or she is bedridden from the pain! Deaths occur on a relatively low level while the quality of life is severely compromised. The patients languish in misery while their families, employers and GP’s either disbelieve them completely (after all, the tumors are “benign,” right?), since the patient can still tie his or her shoelaces and urinate on their own. But, the high numbers of pituitary patients are slowly being recognized and included in their view of medicine. Bravo for them and good for us.
We are at the “tipping point” in pituitary medicine. The truth shall set us free! By working together, sticking to the facts as opposed to old wives tales, the true seriousness and cost to all of society will come forth and speak for itself. Finally, I want to say that no, we are not hyping the numbers on behalf of the PNA. We have known what the numbers were since 1934! What has not been known, is the severity of some of the symptoms and the deadly nature of others. We will concede that not all tumors present with obvious symptoms! Yet, every day we are in contact with new patients from Outer Mongolia to Saudi Arabia and 125 countries in-between. This convinces us that an untrained physician’s personal, non-scientific opinion on the seriousness of these diseases will not carry the day! The “good” doctors are winning, patients benefit and the PNA is taking the battle to where it belongs---in your living room, bedroom, GP’s office and workplace. Don’t get in our way! 7000 years is long enough to wait to be recognized, even when standing with your hands raised. Pituitary endocrinology has come a long way since the days of Goliath. It still has a long way to go! Join us, because quality counts. So do the numbers of patients with pituitary diseases, who are in many cases struggling for their lives. Do not roll over, do not play dead! If other diseases/disorders, far less plentiful than pituitary tumors are accorded the attention needed to improve the patient’s lives – then we as pituitary patients have the same rights. We are not second class citizens, we did not bring this upon ourselves, our pain is real and our deaths just as mournful! |
PNA SURVEY ON EXCELLENCE IN PITUITARY MEDICINE
PATIENT VERSION
1. What in your opinion, constitutes a Center of Excellence for Pituitary Medicine?
2. Do you view your search for diagnosis as excellent, adequate, or a nightmare? What would you change about the process? Where were you treated?
3. Do you and your doctors view your pituitary tumor/disease as a medical or a surgical or a whole body disease?
4. Were you evaluated or treated accordingly? Was the process efficient?
5. In retrospect, were you referred to a "quality" center, no center, or just whoever is/was nearby?
6. Where did you receive the bulk of your information about your condition?
7. Were mental/emotional health staff members made available to you (and your close family)?
8. Have you received follow-up care, intense at first, by your doctors, to ensure that you received complete hormone replacement as needed, with adjustment of your doses?
9. Did you receive prescriptions for medications to relieve insomnia, depression, anxiety etc.? Was it explained to you what you need at a minimum to stay upbeat, happy, and come as close to normal function as possible.
10. Did you receive counseling to help deal with family relations, your career, responses from HR departments, insurance issues, etc.?
PNA SURVEY ON EXCELLENCE IN PITUITARY MEDICINE
FOR MEDICAL PROFESSIONALS
1. What, in your opinion, constitutes a Center of Excellence for Pituitary Medicine?
2. What is your role in diagnosing pituitary disease? How do you think the system could be improved, so as to speed up diagnoses? What processes or programs are in place at your institution to ensure early, accurate diagnoses of pituitary problems?
3. Do doctors you know or work with view pituitary tumor/disease as a medical or a surgical issue, or a whole body disease? In your view, what is the best approach and why?
4. Please list the top three universities or medical centers for pituitary care (inside or outside the U.S.). Please list the reasons for your ranking. What do you particularly admire about them?
5. If you work with a pituitary center, does your organization have a trusted pathology lab on-site? Do you use a team approach where the endocrinologist, surgeon and other professionals work as a team on each patient’s case?
6. What does your organization do to disseminate the latest medical information to the staff? To the patients?
7. Does your organization offer a mental/emotional health care component to your treatment plan before, during, and/or after pituitary surgery?
8. What is your organization’s standard for follow-up care, particularly hormone replacement?
9. Does your organization offer prescriptions for medications to relieve insomnia, depression, anxiety etc.? What do you do to return your patients back to normal functioning?
10. Does your organization offer counseling to help deal with family relations, career, responses from HR departments, insurance issues, etc.? |
We Gratefully Welcome Our New
PNA Professional and Corporate Members:
(click on name for detail) |
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Emotional Aspects of Pituitary Disease
 The Pituitary Patients Resource Guide is the perfect reading companion and information source for the physical (physiological) aspects of pituitary disease. In the same way, a little book called " Emotional Aspects of Pituitary Disease" (Karger, 1998) brings clarity to the questions that seem to bedevil patients, families and doctors, as well as insurance companies, human resources directors and others. What is connected to pituitary disease and what is not? How do I know about myself? Is it really true that pituitary/hormonal disease/tumors affect us first in three different ways: sexual, emotional and physiological?
Yes, truly, it is so. The following index of authors will give you an idea of the caliber of the researchers who put the book together at the PNA's request:
M. Weitzner, M.D. of Tampa, Florida
N. Sonino, M.D. of Padua, Italy
I. Shimon, M.D. of Israel
S. Melmed, M.D of Los Angeles
L.G. Sobrinho, M.D. of Lisbon, Portugal
G.A. Fava, M.D., Editor of Psychotherapy and Psychosomatics, Karger AG, Basel, Switzerland, also of Bologna, Italy and Buffalo, N.Y.
K. Furman, Ph.D. of Canada
Shereen Ezzat, M.D. of Toronto, Canada
P. Burman, M.D. of Sweden
J.B.Deijen, M.D. of the Netherlands
C.A. Meyers, M.D. of Houston,TX
R.S. Swerdloff, M.D., of Los Angeles
C. Wang, M.D., of Los Angeles
R. Knutzen, PNA CEO, of Thousand Oaks, CA.
The book “ Emotional Aspects of Pituitary Disease” begins with an article called "Neuropsychiatry and Pituitary Disease: An Overview" and ends with one entitled "The Impact of Pituitary Disease on the Family Caregiver and Overall Family Functioning." The subject simply can’t be explained much better than this. For those of you who have to struggle every step of the way to be believed and get treatment, this is your "traveling companion"! Read it and carry it with you. It will save you an enormous amount of grief, time, and money. You are sick, not a malingerer and have every right to be medically treated for the emotional distress you experience.
Though the book is no longer available in print, the PNA has hoarded some copies just for you. The questions keep coming, even though we published the answers years ago. Now we have to put the issue on the table again from time to time so patients will be helped and believed. The PNA is pushing for research in this area as quickly and strenuously as we can, but only you can support this by getting the book, supporting the PNA’s work, and writing us about your experiences. Treat yourself and relieve your mind - yes, there are answers!
Go to the PNA Bookstore to order your copy! |
PNA '07 Fundraising Drive
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 “Most people lead lives of quiet desperation” - Henry David Thoreau
Doctors’ and psychiatrists’ offices are filled with them, but then so are business offices, hospitals, schools and homes. One person in five in the world lives this way due to pituitary disorders. The question becomes: “Is this the way I have to live?” Fortunately, the answer is, no.
We at the Pituitary Network Association are the premiere pituitary/hormonal information network in the world. We know we have been instrumental in many changes in pituitary medicine, and have had a large impact on pituitary patients’ lives and well-being worldwide.
My appeal is simple and to the point: We need your help now more than ever to continue doing our current level of work, as well as to expand to meet the needs of tomorrow. Our goal is to make all of the medical community and the general populace aware of pituitary illnesses and provide standards for earlier diagnosis.
In order for us to successfully achieve this, we desperately need your help. Your generous donation to the PNA will secure these goals. Your gift by check, money order or credit card will be deeply appreciated. We are also structured to accept stocks, bonds and many other financial gifts. We are a fully approved non-profit 501 (c) (3) organization; therefore your contribution is tax- deductible.
Your voice will help break the silence.
Wishing you all the best in health and happiness,
Robert Knutzen
Pituitary Network Association
To make your tax-deductible donation on-line today, please visit: http://www.pituitary.org/donate/
or by mail: Pituitary Network Association, P.O. Box 1958, Thousand Oaks, CA 91358
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Open Invitation From The PNA!
The PNA wants to hear from you! We want the Highlights newsletter to better reflect the interests of our readership, so the PNA is issuing an open invitation to doctors and patients alike to get involved - and submit articles or editorials you’ve written. Please feel free to pass along interesting articles you come across, that have to do with pituitary and hormonal issues. Please send all submissions to PNA Editor Suzanne Potter at spajot@earthlink.net. You never know, maybe you’ll see your byline in the next edition! |
PNA Patient Membership Benefits – It Doesn’t Get Any Better!
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The value of a Pituitary Network Association membership is second to none. The PNA is by far the largest, most successful and influential pituitary educational and awareness-raising organization in the world and we get referrals from institutions such as the National Institutes of Health. Our physician finder allows patients to find quality specialists as easily in Alaska as in Cape Town, Sydney or Jerusalem. We tell the story of pituitary problems and patient difficulties all over the world and we educate the general medical community – something no other organization does. Life-saving information is only a phone call or an e-mail away. We advocate for patients to the governments in many countries for better knowledge and care for pituitary patients and we pioneered bringing the field of mental health care into pituitary patient care. Who else works for you, on a daily basis, to reach and enlighten medical authorities, the media and the yet-to-be diagnosed patients? WE DO. Every day. But only with YOUR help.
Extended ‘New and Improved’ Patient Member Benefits:
Ask the Experts – Reorganized and Streamlined.
Ask the Experts gives members the opportunity to ask their burning question and receive a knowledgeable answer from an endocrinologist or neurologist. Questions and answers are posted on the website (without names or personal information) so that all members can benefit and learn. While Ask the Experts is not a substitute for a clinical visit, it is a wonderful educational opportunity for patients to share with their families, physicians and other patients.
Highlights: “Member’s Articles”, “Featured Articles” and Highlights Archive
Highlights is the PNA’s electronic monthly magazine featuring the most current information in hormonal health, articles, events and medical updates – and now it will include samplings of the “Member’s Article of the Month” and “Featured Article of the Month”. Access to the full articles will be exclusively for our members. Members are also able to access all past and present issues of Highlights in our Members Library Highlights Archive.
Network Magazine Archive
The PNA’s quarterly publication, Network Magazine - in print for several years, is still a wealth of information, with medical and patient articles and many other features. All copies are available in our Members Library Network Magazine Archive.
Members Library Expansion
Each month, our Members Library will continue to expand with the latest in articles, surveys, and clinical trials information.
Periodic Proactive Emails
Delivered to your email, we will keep members informed with brief messages on pituitary awareness, news, updates and articles.
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PNA’s 1 in 5 Campaign
Conservatively, ONE IN FIVE develop or harbor PITUITARY TUMORS. |
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1 in 5 Wristbands are here!
Join the PNA’s “1 in 5” Campaign to raise pituitary and hormonal health awareness by purchasing our “1 in 5” wristband! All proceeds go directly to the PNA, and will help us to continue to do what we do best -- help you!
“You’re not crazy…you’re not alone…you’re 1 in 5.”
Sixty-five million North Americans suffer silently from pituitary and hormonal disorders. Your voice can help break the silence.
Wristbands are can be purchased for $5.00 in the PNA bookstore at www.pituitary.org/store |
How To Help
You can support the Pituitary Network Association by donating your unwanted, used or broken cell phones or empty inkjet cartridges. Your donation will help us raise money and also protect the environment. Your unwanted cell phones and inkjet cartridges will be recycled in accordance with EPA regulation or refurbished and reused. And, depending on the value of the items you donate, your donation may be tax deductible. Please help us by sending your donation to: P.O. Box 1958, Thousand Oaks, CA 91358. Or, go to this website:
 www.Phoneraiser.com- You can support the Pituitary Network Association by donating your unwanted, used or broken cell phones or empty inkjet cartridges.
Another great way to help, by selling on eBay!
www.MissionFish.org- Give to your favorite cause by selling on eBay! Just list your items with eBay Giving Works - the easiest way to sell certified charity items on eBay.
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The Revised 4th Edition of the Pituitary Patient Resource Guide
in perfect bound book and CD formats
 The Pituitary Patient Resource Guide Revised Fourth Edition is the most comprehensive and up-to-date source of information on pituitary disorders available worldwide is now perfect bound and reorganized with a sleeker look and new cover. This newer release of the Pituitary Patient Resource Guide is also available compact disc. Get all the latest information on pituitary diseases and disorders. The PPRG is a must for patients, their families, doctors, other medical professionals, as well as the government health agencies, and the insurance and pharmaceutical industry. Go to the PNA bookstore at https://www.pituitary.org/store/bookstore.aspx and order your copies today!
This letter from a patient says it all:
You gotta get the guide!
I was diagnosed two weeks ago with a macroadenoma. I can tell you that the information on the boards is great, but the Pituitary Patient Resource Guide is invaluable. I got mine this last week and I have already been able to use it to challenge what I have been told by my endocrinologist and neurosurgeon.
- Patient
The contents and the quality surpass any of the previous editions and we urge every medical center and clinician's office to get their copies early. The updated information we provide is superb. Vital medical knowledge is presented in short, understandable and USABLE form, ready to apply to your treatment and that of your patients today! |
 PNA Speakers Bureau and Calendar
The Pituitary Network Association is now booking for speaking engagements in a prelude to the release of the PNA Speakers Bureau on our website. Reserve our speakers for your next Medical Professional/Patient Event, or offer a "Lunch and Learn" at your Office or Medical/Educational Facility. Our line-up of very qualified and professional speakers include:
Robert Knutzen, MBA, PNA Chairman and CEO
Dr. Sylvia Asa, M.D., Ph.D.
Professor, Department of Laboratory Medicine and Pathobiology University of Toronto
Pathologist-in-Chief, University Health Network and Toronto Medical Laboratories
Dr. Shereen Ezzat, MD, FRCP(C), FACP
Professor of Medicine & Oncology
Head, Endocrine Oncology University of Toronto
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Dr. Gail Rosseau, M.D.
Neurosurgeon
Chicago Institute of Neurosurgery & Neuroresearch
Sharmyn McGraw, Patient Advocate
Daniel F. Kelly, M.D.
Director, Neuro - Endocrine Tumor Center
Saint John’s Health Center and John Wayne Cancer Institute (JWCI)
Edward Laws, M.D., FACS President of the Amer. College of Surgeons
President of World Federation of Neurological Societies
Professor of Neurosurgery & Endocrinology, University of Virginia
For list of topics, scheduling, speaker fees and other information, please contact Barbara Schriber at barbara@pituitary.org or (805)499 9973.
WE NEED VOLUNTEERS! If you have an interest in volunteering as a speaker, trainer, Booking Agent, etc., please contact us, as we need your help! Contact barbara@pituitary.org today! |
COLUMNISTS’ CORNER
Columnists’ Corner is now a regular part of the Highlights Newsletter. It is also available in the member archives on our website. In addition to Jim Shelton's ongoing column on weight and prolactinoma issues, we are truly pleased to feature a monthly column by the esteemed Sharmyn McGraw, patient advocate extraordinaire , TV star and writer, patient group leader at UCLA and recovering Cushing's patient. Her regular monthly column will address Cushing's disease.
Please enjoy these insightful monthly columns; we provide the best information available and ask only for your support and encouragement and suggestions. If you have comments, questions or experiences you would like to share with one of our columnists, please send your email to: pna@pituitary.org. Please be sure to write the columnist's name in the SUBJECT title of your email to ensure its correct delivery. |
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