WHAT'S NEW AT THE PNA
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Message From The Founder:
To Screen Or Not To Screen –
That is The Question!
By Robert Knutzen, PNA CEO, Founder
For many years we have been told that pituitary tumors/disorders are so rare, it is impractical and too expensive and scientifically indefensible to screen for these illnesses. For years I have pondered why, since we know, with approximate certainty, how many in the general population have tumors. Nearly ONE in FIVE!
The issue that brought this forth is the glance I took at the Pituitary Foundation web-site in the UK. Patient after patient speaks of legal action, writing to the National Health Service, inundating the Prime Minister with letters of complaint in regard to various issues, including late or misdiagnosis, Social Security payments, etc. As some of you know, the PNA is not in favor of legal action and would prefer to solve the issues in other ways. Once legal action commences, positions harden, compromise moves away from being an option, and money, not the underlying problem, becomes the focal point – the issue to be resolved. However, we are now pondering whether it might be time to take up a legal battle to get clarity on a lot of issues.
The PNA has been asking, over and over, to have a clarification/categorization of what constitutes clinically significant pituitary disease/tumors/disorders. But in response, dead silence descends over the medical establishment and we might get a silly, wishy-washy answer with no clear beginning and middle or end. The “answer” we get, “I am an expert, I
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determine what is significant” has long since lost its luster. The excuse that “they imitate so many other diseases/disorders” is sheer nonsense.
For example: headaches and fevers are common in many disorders. We say, yes, but when they persist, as they may in many other disorders/diseases, it is time to screen. When unexplained vision impairment or blindness strikes a person, it is time to screen. When a woman misses her menstrual cycle, or it is irregular, it is time to screen. When men or women lose their libido, it is time to screen. When a person rapidly becomes obese, develops a fat pad on their clavicle, accompanied by stretch marks across the belly and buttocks and bruise easily, it is time to screen.
When an adult’s jaw grows and teeth spread, it is time to screen. When hands and feet grow it is time to screen. When joints (elbows and knees and hips) ache and need to be replaced, it is time to screen. When women or men, start to lactate, (when the woman is not pregnant or a new mother) it is time to screen. If there is persistent anger, mood-swings or depression, it is time to screen. If these few examples show symptoms that sometimes, but rarely, indicate another medical problem, so much the better. Something is wrong, so it is better to find out the cause as soon as possible. However, the fact is, most of these symptoms point to a pituitary tumor, cyst or other hormonal disorder. What is so difficult to fathom? The symptoms (other than arthritic ones) are easy to observe, measure and do require an answer. Why we are being dissuaded from getting a diagnosis? We do not know. It is as if most physicians have a “blind spot.” They see the patients and refuse to recognize the symptoms for what they most often are: unmistakable!
We know that millions of pituitary patients are descending into a miserable, painful and often life-shortening hell, all the while being told that our diseases are too difficult to screen for. No, they are not! At least not for the large majority of us. Prolactinoma is easily checked and good treatment options are available. Acromegaly is easier than ever to check for. Between GH levels and IGF-1 levels it is becoming easier and simpler. Cushing’s is still a conundrum, but if there is a willingness to admit that not all Cushing’s symptoms are alike, a case can easily be made for screening. Even non-secreting tumors (inappropriately named non-functioning or incidental tumors) often show a myriad of symptoms, from sexual problems to apathy to mood disorders or lack of libido, (an insidious and cruel fate for many). This should promote screening.
We all know that between 3 and 15 years can slip by as the patients frequent physicians, marriage and family therapists, chiropractors, snake-oil salesmen and other “thought leaders” of every stripe while desperately seeking answers in all the wrong places. Meanwhile their health, family, money, careers and relationships evaporate while the patients anxiously seek help.
It is very clear that the medical community must take responsibility for determining the criteria for the testing—since that is outside of the patient community’s scientific ability! We, the patients, only know the horrendous price we must pay for failing to get a timely diagnosis and competent treatment. And, simply said, society pays the price! Yes, our families, ourselves, our employers, insurance companies, doctors, hospitals - we are the society we live in. We, all of us, pay a steep and non-refundable price for these disorders and the way the “system” is organized today. As politicians say, “We need a change!”
As is said in legal circles, “Ignorance of the law is not an excuse.” In other words, just because you travel past a school at 50 miles an hour, not noticing the nearly obscured 25 mph speed limit or the school zone sign, this will not keep you from getting a ticket. You should have known.
For physicians who refuse to take the needed steps to diagnose patients, ignorance should not be allowed as an excuse. The medical knowledge is there! It is easier than ever to be a good doctor. What you don’t know, you can easily look up! Or pick up the phone and call someone! Sooner or later, some attorney will find a reason to sue on behalf of a patient who didn’t get been given an accurate or timely diagnosis for a Pituitary Condition (tumor or otherwise). Simple honesty would also have helped. It is possible to admit, “This is not my field of medicine, let me refer you to someone specializes in this.” That could and should be the correct answer.
I’ve lived with acromegaly for 70 and I’ve had thousands of conversations with patients. I’m convinced that screening an at-risk population is neither too difficult nor too expensive. With your eyes and ears open, it is remarkable what you can find! |
The PNA Seeks Grant Writer
The PNA is presently looking for an individual who has excellent writing skills, and can write professional letters in seeking financial support for the many patient educational awareness programs we have coming up this year. We would like to hire a trustworthy independent contractor - an individual who would be excited and eager to learn about the PNA (check out www.pituitary.org). Once this person has a clear understanding of the PNA’s goals, we feel that the markets that he/she can target are endless. Lastly, the candidate must have excellent follow-up reporting tools/skills and must be able to report to the PNA at bi-weekly in-house meetings to report on grant request status.
For more information, please contact Pam Greenway at 805-499-9973 or at pam@pituitary.org. |
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! |
Physicians and Universities: The world looks to us for answers. Wouldn’t you like them to look to YOU as well?
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By joining the Pituitary Network Association, you are joining an organization that gives answers to patients around the world on a daily basis. Your expertise is needed by patients and their families across the globe. Be the link in your community to find the help and the answers they need.
The PNA is the #1 referral site for patients and government agencies such as the NIH. In the brief time since its inception, PNA has served more than 630,000 pituitary tumor patients worldwide. Add your name and/or your University’s name to our organization and be the one that patients and their families look to for answers!
Visit our University Member Page
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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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