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. You can find it online at http://www.msnbc.msn.com/id/22427527/.
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
URL:
http://www.msnbc.msn.com/id/22427527/ 
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