FEATURED NEWS AND ARTICLES FOR MARCH

A great friend of the PNA, Dr. Patricia Crock, has lost her father to cancer. He was an eminent ophthalmologist; she is the Head of Pediatric Endocrinology and Diabetes, at John Hunter Children's Hospital, and an Associate Professor at the University of Newcastle. She provided the following response to the PNA’s request to print her father’s obituary.

Dear Bob,
Thanks so much for your kind words. I was able to spend two months with my parents, helping Mum look after Dad. Dad wanted to die at home and we were able to keep him there with the help of an amazing palliative care team. It was such a special time for all of us and I think that it has made the grieving a little easier.

Dad was well known in the International Ophthalmology world - and well known in the States as he trained at Johns Hopkins in Baltimore as well as in Florida. He diagnosed many pituitary tumours in his career when they presented to him with field defects - many in the days before the fancy MRI scans! The obituary that I sent was written by one of my sisters and published in the Sydney Morning Herald and the Melbourne Age - so they have been widely read. I totally agree with you that we should celebrate Dad's life - but he was always humble and never wanted any fuss.

I am happy for you to print the obituary if you think it would be of interest to your audience.

Here is the obituary for Dr. Gerard Crock:

Doctor saved sight of thousands
January 7, 2008
Gerard Crock, Australia's first professor of ophthalmology, helped to bring this specialty into the age of microsurgery. His skills as a surgeon and the inventions of his team at Melbourne University saved the sight of thousands. His enthusiasm and achievements were such that it would be hard for anyone to fathom why everyone would not want to be an ophthalmologist.

A consummate clinician, highly innovative surgeon and inspiring teacher, his patients included community leaders, judges and QCs, but also tradesmen, farmers and people from all walks of life. Many became longstanding friends. His primary interest was in his patients as people; however interesting or rare their condition, they were never mere "cases".

Gerard William Crock, who has died of cancer at 78, was one of identical twins born in Perth to Vernon and Annie Crock. Vernon was the general manager of an insurance company whose clients included the mining magnate Lang Hancock.

Gerard enjoyed a remarkable bond with his equally talented brother, Harry. They were educated by the Jesuits in Perth before beginning studies in dentistry, there being no course in medicine in Western Australia at the time. The twins were then supported to study medicine at Melbourne University, where they shared various prizes.

They graduated in 1953, Gerard with the exhibition in medicine and Harry with the Ryan prizes in medicine and surgery at St Vincent's Hospital. The two, remarkably similar in appearance, enjoyed a legendary ability to finish each other's sentences. They were so often mistaken for each other that they adopted a lifelong policy of acknowledging salutations from confused strangers.

In 1956 Gerard married Jacqueline Bladin, a biochemist, founding a partnership crowned with personal and professional achievements. He undertook his specialist training as an ophthalmologist at Moorfields Eye Hospital, London, followed by a senior lecturership in ophthalmology at the University of London and a year as a Harkness fellow at Johns Hopkins Hospital, Baltimore.

Crock was appointed Melbourne University's foundation Ringland Anderson Professor of Ophthalmology in 1963, at the age of 34. It was the first medical specialty chair in Australia and only the second chair in ophthalmology in the British Commonwealth.

He established the university's department of ophthalmology and much of the Royal Victorian Eye and Ear Hospital as it is today. He was chairman of the hospital's senior medical staff from 1982 until 1987, when he "retired" to a busy private practice. Specialising in the retina, cornea and glaucoma, he was Melbourne's leading cataract surgeon.

Professor Crock was a world leader in retinal imaging and a pioneer of fluorescein angiography. He showed to medical students films of the back of the eye, which showed fluorescein dye enter the eye, pass through the arteries, then the capillaries, and finally leave through the veins. He and Nan Carroll worked with Australia's first academic scanning electron microscope, including quality control for the bionic ear that Professor Graeme Clark was developing on the floor above. He supported the new department of optometry, headed by Professor Barry Cole. Together they established the Low Vision Clinic at Kooyong for the Association for the Blind (now Vision Australia).

With Bernard O'Brien, one of the country's pioneering microsurgeons, he developed microsutures - needles and threads so fine that veins the size of a pin's head could be repaired or joined. With Jean-Marie Parel and Ljubomir Pericic of Melbourne University Crock helped invent a whole range of microsurgical instruments, including the Schultz-Crock binocular ophthalmoscope and a corneal cutter for precision cutting of the eyes of donors and recipients in corneal transplants.

Crock trained a generation of ophthalmologists across Australia as well as many international fellows, many of whom shared Sunday dinners with the Crock family, friends and patients.

He worked with Fred Hollows's indigenous eye-care programs in Aboriginal communities and was a founding member of Project Orbis, in which experts from Australia and the United States delivered training programs in China.

He ran fieldwork projects in the Philippines, the Cook Islands and India and was hospitaller for St John Eye Hospital in Jerusalem for more than 30 years.

Gerard Crock was made an officer of the Order of Australia (AO) in 1985 and a Knight of the Order of St John of Jerusalem in 1990. Rodney Westmore, an ophthalmologist in Launceston and a former student wrote to Crock shortly before his death: "It was almost routine that patients with retinal detachments would turn up on Friday afternoon. There was no retinal surgeon in Tasmania, and your invariable response on telephoning was 'Send them over, Rod' ".

Gerard and Jacqueline Crock celebrated 50 years of marriage in December 2006, and the arrival of their 18th grandchild last year. He was sustained in the final months of his long illness by many friendships and the remarkable palliative care provided by his niece Liz Crock and her husband, Giancarlo Di Stefano.

He is survived by Jacqueline, their six children - Tricia Crock, an associate professor of pediatric endocrinology in Newcastle; Mary Crock, a professor of public law at Sydney University; John Crock, a plastic surgeon who works in developing communities; Marnie O'Bryan, a lawyer and teacher at Scotch College, Melbourne; Peter Crock, a senior business analyst for a large Australian agribusiness; and Paul Crock, an agribusiness communications and marketing professional - their partners and 18 grandchildren.

Hugh Taylor, Tony Stephens
This story was found at: http://www.smh.com.au/articles/2008/01/06/1199554483808.html

Pete, Lisa, Rachel, Christian, David and Judy Bettendorf

Family Battles Heart Defect, Epilepsy and Pituitary Tumor The PNA recently became aware of the Bettendorf family of Charlotte, North Carolina. They are a family of six - and three of them are battling major health problems - all at the same time! The father, Pete, has a pituitary tumor. Their youngest son, David, who is 13, suffers from epilepsy. Worst of all, their youngest daughter, Lisa, who is almost five, has a congenital heart defect. So far in her young life Lisa has endured three open heart surgeries and two strokes. Their story touched our hearts – so we thought it might be of interest to you. You can learn more about them on Lisa’s website at http://www.caringbridge.org/nc/lisa/. The site makes it possible for you to shop online and make contributions toward their medical expenses at the same time. Recently we asked the mother, Judy Bettendorf, to tell us more about the prognoses for her daughter Lisa, son David and husband Pete. Here is the update:

Dear PNA,
I am touched you think our story is newsworthy. I promised God when He saved Lisa's life that I would share her story and all he did for our family with anyone who would listen. Her fifth birthday is March 5 and each day is a definite gift from Our Lord! I would be thankful to have her link included.

Her prognosis: She WILL require more open heart surgery on her mitral valve implant as she grows. Only God knows the timing of that, it will be determined by her height and how well her valve pumps with her growing body. The too-small abdominal aorta is being monitored every six months along with her femoral occlusion. The abdominal aorta is much too long to repair unless absolutely necessary (they are watching for blood pressure problems, kidney problems, aneurysm). There isn't a surgeon in the country who has ever attempted such a repair on such a small child.  Lisa is too young/small to support a bypass on her femoral artery at this time due to her vessel size. The biggest issue for that problem is her right side is growing shorter than her left due to diminished blood flow. It also causes her great pain and difficulty walking at times, although she never complains. While this all sounds horrible, if you saw her in person you would NEVER know she had all these health issues in addition to her three open heart surgeries or 2 strokes. What a tremendous miracle THAT is!

David returns to Chapel Hill to the neurologist on January 31 (it is a three hour drive from here one way). It appears he will continue on his seizure medication and IV iron infusions every three to four weeks. I am certain we will have to return to Chapel Hill in the near future as well for another sleep study. He is extremely bright, however, school is always a struggle and no one seems to know how to help him or where to send us for additional help. He receives labs locally at the hematologists every 2 to 3 weeks because of a low ferritin level they aren't sure why he has.

Pete returned from the first Gulf War April 15, 1991 and I knew he was different than when he left. It was a gradual decline of things...All the symptoms that you see listed for adenomas, Pete has been through them. This was tough for a strong Marine returning from a war zone. WE made excuses for many things, adjusting to life back at home, he was in college, we had another child, our home burned down, we moved, we had another child, we had Lisa. Just 6 days before she was born his urologist told us he had a small pituitary adenoma and told us he could be treated with medications. This went on for several years even though I BEGGED Pete to see an endocrinologist (I am an RN and felt a second opinion would not be a bad idea). The urologist convinced him that he would be wasting his money on a bunch of tests that he didn't need and since money is ALWAYS an issue for us, Pete went along with him until another urologist took over his care and saw his testosterone levels were WAY to high and the MRI showed the adenoma had grown and NOW there was a secondary lesion just at the base of the brain. The neurosurgeon was called in and he said things were stable but convinced Pete to have his care taken over by the endocrinologist. That was in September 2006. In June 2007 we were told by the neurosurgeon the adenoma had changed shapes and was close to the optic nerve and the lesion had grown. Then the radiologist said well, he wasn't sure the neurosurgeon was right, it could be shadowing. Again I BEGGED for us to go to another facility. Pete didn't want to because of the expense and we don't really know where to go....then when he spoke to the endocrinologist nurse just a week after an appointment about some symptoms and was told they weren't related (DUH, yes they are!) Pete realized he needed to get another opinion. It has been very difficult on me caring almost solely for the household on my own.... Pete works and often that is ALL he is able to accomplish after a hard day at work. He has been given testosterone gel, cabergoline and now I give him testosterone IM injections weekly.

Symptoms have been vast and include, but not limited to severe fatigue, headaches, exhaustion, memory loss, white hot anger (unreasonable), apathetic, disinterested, muscle loss and tone,  happy to just go to work and come home, never plans anything, seems depressed but denies it, hypogonadism, striae, muscle weakness and far more than I can count. The doctor told Pete it was all unrelated! After all my research, he finally realized the doctor probably didn't know HOW to best treat him. That is why I had hoped for an idea of WHERE to take him for the next set of opinions. We are having a very tough time financially as I am certain you can appreciate. I just thank you for the opportunity to share more of our story.

Blessings,
Judy Bettendorf
Please visit Lisa's website at: http://www.caringbridge.org/nc/lisa/

PNA Featured In News Article
The PNA is very pleased to be the subject of an article published in the Ventura County Star Dec. 29, 2007.

Pituitary cases hard to diagnose
By Michelle L. Klampe
InsideVC.com

After years of headaches, infertility and other problems, Leslie Cornish was diagnosed with her first pituitary tumor in 1988. She had surgery to remove the tumor, but within a year, she'd developed another one. Cornish went looking for more information about pituitary disorders and found the Pituitary Network Association, a nonprofit patient advocacy group that promotes research and awareness of pituitary disorders. "What a godsend," said Cornish, 55, of Santa Barbara. "The information there just put all the pieces together for me."

Now Cornish turns to the PNA and its founder, Robert Knutzen, when she needs help, a referral to a physician or even when she just needs someone to talk to. She's also referred others to the organization in hopes they won't have to struggle as long as she did to get the proper diagnosis and treatment.

"Bob is so great with that. He says This is the guy you need to talk to,'" said Cornish, who ultimately was diagnosed with Cushing's syndrome, a disease of the adrenal glands that can be caused by abnormalities in the pituitary gland. "It's been a very long journey, and he's been there every step of the way."

Leading information source
Knutzen, of Thousand Oaks, and the nonprofit organization he launched in 1992 have become a leading source of information on pituitary disorders, which are often misdiagnosed and misunderstood. Pituitary tumors are believed to affect as many as one in five adults, though they many go undiagnosed.

"We are trying to mend a gaping hole in the societal fabric and in the knowledge of medicine," said Knutzen, PNA's board chairman and chief executive officer. "We keep both the medical community and the patient community informed."

From its small headquarters in Newbury Park, the PNA reaches millions of people each year. People from 120 countries visit its Web site each month, with 1.7 million to 2 million hits on average, said Debi Thompson, publications director.

Knutzen and his team hope the work they do in the next year will enable them to reach many more. The association is ratcheting up its fundraising efforts and preparing to launch a revamped Web site that will offer information in 10 languages. They plan to have the new site running by October.

Frustration led to formation
"I think the PNA is very much at a crossroads to reaching more people and being more sophisticated in their approach," said Linda Rio, a PNA board member and marriage and family therapist in Camarillo. "It just seems to be at a tipping point."

Among the ideas for the Web site are videos that would instruct doctors in other parts of the world on new surgical and treatment techniques. The PNA plans to establish an endowment to support the Web site and development of content for it, said Carrie Bronson Roberts, the association's grant writer.

Knutzen, who struggled for years with an undiagnosed pituitary disorder, formed the PNA with a handful of other pituitary patients and his doctor after growing frustrated with the limited amount of information available on the disorder.

"It upset me very much that if I was looking for information on dandruff or athlete's foot, they had it," he said, but there were no brochures or pamphlets on pituitary tumors. "I was partially angry and partially intrigued to see how far I could go in putting this together."

Doctor serves on board
Knutzen's doctor, Shereen Ezzat, formerly of Cedars-Sinai Medical Center in Los Angeles and now professor of endocrinology and metabolism at the University of Toronto Mount Sinai Hospital, serves on the organization's board of directors. He credits Knutzen for the network of information and resources now available to pituitary patients and their families.

"Through his Web site, Bob has managed to capture the minds and hearts of patients and physicians from across the globe," Ezzat said in an e-mail. "As testified from the number of daily hits, people, governments and organizations now use this site and the PNA's Patient Resource Guide as a reference point."

Without the PNA, "we would be in a significantly disadvantaged position with many more patient questions remaining unanswered," Ezzat said. "I also believe that the PNA has served to diminish patient anxiety through higher quality information."

Many ways to reach out
To spread the information and research on pituitary disorders, the PNA publishes a newsletter, participates in medical conferences and seminars, offers an inch-thick patient resource guide, and hosts a biannual conference, with the next one scheduled for Oct. . A few years ago, the organization commissioned a review of all known research on pituitary disorders.

"We're trying to get the word out to people who most need to know - mainly the patients," Knutzen said.

But healthcare providers, including general practitioners, nurses and even therapists, also need information about pituitary disorders, he said, since they are likely to encounter undiagnosed sufferers.

"We need to get down to the local health authorities," Knutzen said.

Rio, the marriage and family therapist, was skeptical when Knutzen first told her about pituitary disorders and their impact. Then she did her own research. What she's learned has changed how she interacts with her patients, she said.

"When I first meet someone, I ask different questions, and I use a different set of eyes," she said. When patients are depressed, she asks more about the kind of depression they're experiencing and about other health issues that might indicate a pituitary problem. If she suspects one, she refers her patients to a physician.

"I never would've asked those questions before," Rio said. "I'm still doing the same kind of work, it's just with a little different twist."

For information on the biannual conference, call the PNA at 499-9973 to be added to the mailing list.

At a glance
- What is the pituitary gland? The pituitary is a small, pea-sized gland at the base of the brain that functions as the "master" gland. It sends signals to the thyroid, the adrenal glands, ovaries and testes, directing them to produce hormones that affect metabolism, blood pressure, sexuality, reproduction and other vital body functions.

- What makes a pituitary gland malfunction? Tumors (primarily benign), inflammation, infections and injury can all cause the pituitary to malfunction. In some cases, other tumors can spread to the pituitary and cause it to malfunction; also radiation therapy to the brain can cause normal pituitary cells to malfunction.

- What happens when the pituitary malfunctions? Headaches, compression of the optic nerve with loss of peripheral vision, and a variety of hormonal effects can occur when the pituitary is not working properly. Pituitary disorders can stunt growth in children or cause mood disorders, sexual dysfunction or infertility, diabetes, osteoporosis, arthritis and accelerated heart disease.

- How many people are affected by pituitary disorders? An estimated 20 percent of adults worldwide are believed to have pituitary tumors, though many go undiagnosed for years.

- Why are pituitary disorders so hard to diagnose? Pituitary disorders present an array of symptoms and often signal unrelated conditions.

- What treatments are available? Medical, surgical and radiotherapeutic treatments are available for people with properly diagnosed pituitary disorders.

- For more information on pituitary disorders, visit the PNA at www.pituitary.org.

- Sources: Pituitary Network Association, National Institutes of Health

Muted Morning Cortisol Response Linked to Chronic Fatigue in Women
ATLANTA, Jan. 17 -- Women with symptoms of chronic fatigue syndrome have a muted morning cortisol response that may represent an underlying mechanism of the condition, according to investigators here.

Androgen-Deprivation Therapy Linked to Diabetes
In men with prostate cancer, androgen-deprivation therapy (ADT) appears to increase the risk of subsequent diabetes, according to researchers.
Reuters Health Information 2008

Trial Into French Growth Hormone Scandal Begins
Seven French former medical officials went on trial on Wednesday after a 17 year-long investigation into contaminated growth hormones that caused the death of more than 100 people from Creutzfeldt-Jakob disease. The doctors and pharmacists face maximum terms varying from 3 to 10 years if convicted. They face charges of aggravated deception, manslaughter and causing unintentional injury.
Reuters Health Information 2008

Models Predict Success With Growth Hormone Treatment
Mathematical models, particularly those incorporating both growth and endocrine data, can predict which short children will benefit from treatment with growth hormone (GH), according to a new study.
Reuters Health Information 2008

Testosterone Reduces Visceral Fat Gain in Nonobese Older Men
Testosterone therapy lessens the gain in visceral adipose tissue and the loss of skeletal muscle in aging men who are not obese, Australian researchers report in the January issue of the Journal of Clinical Endocrinology and Metabolism.
Reuters Health Information 2008

ASCO GU: Immediate Androgen Suppression Questioned for Node-Positive Prostate Cancer 
SAN FRANCISCO -- Delaying hormone therapy for node-positive prostate cancer until disease progression may not impair survival, researchers found.

CONTINUING MEDICAL EDUCATION

For-Profit Rating Company Names 50 Hospitals as Nation’s Best 
GOLDEN, Colo. -- A healthcare rating company here has named 50 American hospitals with an eight-year track record of stellar rates of avoiding major complications and patient deaths.

Patient Involvement Doesn’t Guarantee Better Outcomes 
IOWA CITY, Iowa -- Patients who take an active role in their healthcare may not always wind up in better health than those who prefer to let their physician take the lead, researchers here found.

CME Hypothyroidism in Women With RA Linked to Higher Risk for CVD
Hypothyroidism in women with rheumatoid arthritis was linked with a higher risk for cardiovascular disease vs women with a healthy thyroid and an already established increased cardiovascular risk.
Medscape Medical News 2008

PSA Levels Deceptively Low in Obese Men 
DURHAM, N.C. -- Obesity may hide early evidence of prostate cancer by lowering prostate-specific antigen levels, according to a community-based screening study. full story
http://www.medpagetoday.com/Urology/ProstateCancer/dh/8422

CME Neurohormonal Regulators of Obesity: Mediating Weight Loss Through Peptide Hormone Therapeutics
Review evolving concepts in the neurohormonal regulation of obesity pathophysiology

CME No Link Between Androgen Levels and Risk for Prostate Cancer
New pooled analysis of data of previous studies shows no significant relationship between serum levels of sex hormones and the risk for prostate cancer, thus debunking the androgen-driven hypothesis.
Medscape Medical News 2008

CME Neurohormonal Regulators of Obesity: Mediating Weight Loss Through Peptide Hormone Therapeutics
02/13/2008
Review evolving concepts in the neurohormonal regulation of obesity pathophysiology

CME Therapy Insight: Metabolic and Endocrine Disorders in Sickle-cell Disease  
01/23/2008
The sickle cell gene is carried by 1 in 12 African Americans. Management of the endocrine and metabolic disorders related to sickle cell disease (SCD) and testing for iron overload in SCD are reviewed.

CME Managing the Symptomatic Menopausal Patient in Primary Care: A Case-Based Approach
This interactive CME activity provides practical recommendations and the latest clinical evidence to improve the personalized care a women receives during menopause.
Source: Interstate Postgraduate Medical Association and MEV Healthcom, Inc. more

CME/CE Recognizing and Treating Androgen Deficiency Syndrome in Aging Men
Don't miss this review of late-onset male hypogonadism, a symptom complex that is associated with a number of chronic illnesses and is a cause of increased CVD mortality.

CME Testosterone and Mortality: An Expert Interview With Dr. Adrian S. Dobs
Accumulating evidence points to a significant association between low testosterone and mortality. Medscape spoke to Dr. Adrian Dobs about the results of recent studies in this area.

CME/CE Recognizing and Treating Androgen Deficiency Syndrome in Aging Men  
01/31/2008
Don't miss this review of late-onset male hypogonadism, a symptom complex that is associated with a number of chronic illnesses and is a cause of increased CVD mortality.

Serum Sex Hormones Divorced from Prostate Cancer Risk 
OXFORD, England -- The level of sex hormones in the blood has no association with the risk of prostate cancer, researcher here said.

  The latest public events, activities, and health information resources from the National Institutes of Health are now available in the March 2008 issue of the NIH Public Bulletin, online at:
http://getinvolved.nih.gov/newsbulletins/default.asp?issue=March2008
For prior issues, visit http://getinvolved.nih.gov and click on "All Issues".

The PNA continues to be flooded with requests for referrals for physicians, surgeons and mental health providers who are knowledgeable in pituitary disorders from patients all over the world. This proves once again that pituitary disorders do not discriminate. This is a universal problem aggravated by a lack of awareness and resources. It is our goal to find qualified professionals in every country and in every state for all pituitary patients. For details on professional memberships, please contact Barbara Schriber at barbara@pituitary.org today!