What's New? 

April 20, 2005
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In This Issue: Happenings Site News Meetings Chat Info

Our Jayne is in the News Again! After years, mystery ills diagnosed
National Institutes of Health, Vital Medical Resource
Patient Issues with Insurance? Employer? Creditor?
(Cushing's) Hurried, harried
Waist circumference to predict insulin resistance
Steroid use disputed for mild asthma
Upcoming Meetings in DC Metro Area, New England, Albany, Australia,
Los Angeles, Scotland, Baltimore, San Diego and Chicago; Local Meetings
Read all about them below.


Next Online Newsletter will be Wednesday, April 27
read archived issues here »
News!
Jayne in the paper again!

source: http://www.fredericksburg.com/News/FLS/2005/042005/04032005/1714998

After years, mystery ills diagnosed
April 3, 2005

http://www.fredericksburg.com/News/FLS/2005/042005/04032005/1714998/locushings.jpg

Jayne Kerns holds her daughter, Catherine,
and son, Brian,
at their home
in Spotsylvania County. Kerns is determined to raise awareness
of Cushing's disease,
an uncommon hormonal disorder that often leads to fatigue, weight gain, high blood pressure and other problems.

By JANET MARSHALL

On the day her life changed for the better, Laura Zastrow was exhausted. So much so that she almost didn't go to the Quantico commissary, as she'd planned.

For years, Zastrow had felt run down without knowing why. One doctor chalked it up to depression. But that afternoon at Quantico, a stranger offered another diagnosis: Cushing's disease.

Rare and often misdiagnosed, Cushing's causes fatigue, weight gain, hair growth, mood swings, high blood pressure and other ills, all familiar to Zastrow.

The stranger, Jayne Kerns, recognized her own puffy face and hairy arms in Zastrow.

"I said, 'I feel like I'm looking in the mirror,'" Kerns said.

Kerns encouraged Zastrow to check out a Cushing's Web site, which Zastrow did. Every symptom listed matched her condition. Her doctor ran some tests, and the results confirmed Zastrow had Cushing's, a hormonal disorder often brought on by a tumor.

The chance meeting in September 2003 transformed Zastrow's life. In the months since, she's had surgery to remove a large tumor on her pituitary gland and rediscovered her old, healthier self.

"My energy is coming back," said Zastrow, of Locust Grove. "I've lost a lot of weight. I feel good. I don't feel like I'm in a fog anymore."

Kerns, of Spotsylvania County, has made it a mission to raise as much awareness as possible of Cushing's since being diagnosed with the disease in 2000. She's written President Bush asking him to declare a National Cushing's Awareness Day in April.

Her meeting with Zastrow was first described in a Free Lance-Star profile of Kerns in 2004. At the time, nobody yet knew just how life-altering that meeting would be.

It emboldened Kerns to keep reaching out to people she thinks have the disease. And it gave Zastrow hope for a healthier, more energetic future.

"I was at the point where I was deteriorating so fast that if Jayne wouldn't have approached me, I honestly don't know what would have happened," Zastrow said recently. "Obviously, I didn't know anything about [Cushing's], and neither did my doctors."

For those with the disease, April 8 is the unofficial day to recognize it and the man--Dr. Harvey Cushing--who first put a name to it.

People with Cushing's suffer from excessive levels of cortisol, the body's stress hormone. The condition can be caused by long-term use of certain drugs, such as prednisone for asthma.

Often, Cushing's stems from an overproduction of cortisol by the adrenal glands. The pituitary gland sometimes over-stimulates the adrenals, triggering the problem. Tumors on the adrenal or pituitary often are at the root of the problem, and treatment can involve removing the glands.

Kerns' diagnosis followed months of maddening efforts to pinpoint why her body deteriorated, and never recovered, after childbirth.

She said she was misdiagnosed many times, and that one doctor, frustrated by her recurrent problems, told her he no longer had time to listen to her and referred her to another physician.

Kerns ultimately had her adrenal glands removed.

Each year, 10 to 15 people out of every million are thought to be affected by Cushing's, making it highly uncommon.

"Doctors think that Cushing's is too rare for people to have it," Kerns said. "And I truly believe that it is not as rare as people think."

Another local woman, Jennifer Belokon of Fredericksburg, has Cushing's. She was serving in the Army in Iraq when she began feeling weak and gaining weight, adding 60 pounds in three months.

The Army flew her out of Iraq and sent her to Walter Reed Medical Center. After being diagnosed with Cushing's, she had her adrenal glands removed.

"Now, I have no adrenaline, no steroids or anything that will help me produce that second wind when doing anything," Belokon wrote in an e-mail.

Yet she's resumed exercising and is training to run the Rock 'n' Roll half-marathon in Virginia Beach in September. She ran a 10-mile race a few months ago.

"My time was nothing big," Belokon wrote. "But I was proud of myself for finishing."

Getting treated for Cushing's is life-altering, all three women said. Just finding out what's wrong is profound because a diagnosis often follows months or years of mysterious and unsettling ailments.

"It changes people's lives when they figure out what's going on," Kerns said. "It's kind of like discovering that you have diabetes, and then you get insulin. You find something that's going to make you feel better."

For more information on the disease and its symptoms, which include purple stretch marks, check out cushings-help.com or csrf.net.

To reach JANET MARSHALL: 540/374-5527 jmarshall@freelancestar.com
Copyright 2005 The Free Lance-Star Publishing Company.


National Institutes of Health, Vital Medical Resource
The NIH Public Bulletin can be a wonderful resource for you to learn about the many interesting events and resources targeted for the public sponsored by NIH Institutes and Centers.

The March 2005 NIH Public Bulletin is online and can be found at: http://getinvolved.nih.gov/newsbulletins/default.asp?issue=March2005

For prior issues, visit http://getinvolved.nih.gov/newsbulletins.asp.


Patient Issues with Insurance? Employer? Creditor? Patient Advocate Foundation is a national (US) non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. http://www.patientadvocate.org/


News:
We welcome your articles, letters to the editor, bios and Cushing's information.
Submit a Story or Article
to either the snailmail CUSH Newsletter or to an upcoming email newsletter at http://www.cushings-help.com/newsletter_story.htm

Note: These articles are provided in furtherance of the mission of Cushing's Help and Support to help people with Cushing's or other endocrine problems, their friends and families through research, education, support, and advocacy. These news items are intended to serve as background concerning its subject for patient-physician discussions and discussions among Cushing's Help and Support Message Board Members.

These articles contain information by authors and publishers that is subject to the Copyright Act of 1976, and "fair use doctrine" therein, effective on January 1, 1978 (17 U.S.C. § 101 et seq.). Cushing's Help and Support makes no representation that the information and any of the views or comments contained in these articles are completely accurate or current. Cushing's Help and Support takes no responsibility for any of the content.

Cushing's Source: http://www.twincities.com/mld/twincities/living/health/11369100.htm

Posted on Tue, Apr. 12, 2005

Hurried, harried

Many women racing down the fast lane of life may be suffering from a newly named and dangerous syndrome.

BY MOLLY MILLETT
Pioneer Press

If you're too hurried to sit down and read this story, sit down anyway and take a deep breath.

Now, here's the news: You might have Hurried Woman syndrome.

Dr. Brent Bost, a prominent Texas obstetrician/gynecologist with a holistic approach to medicine, developed the phrase after taking the time to really talk to his patients about their lives when they were visiting him for their annual pap smears or other routine appointments.

Again and again, he sees exhausted women pushing aside their own well-being while juggling the responsibilities of home, family, work and other obligations.

"The root cause is chronic stress," says Bost.

To help American women get off their hamster wheels, the doctor has studied the problem of hurried lives, spoken and surveyed other OB/GYNs across the country and has written a book, "The Hurried Woman Syndrome: A Seven-Step Program to Conquer Fatigue, Control Weight and Restore Passion to Your Relationship" (McGraw-Hill, $22.95).

"I think most women can identify with the title," says Bost. "Our pace of life continues to accelerate. We've got 24/7 news; we can talk on our cell phones while we're using the toilet. I used to dictate letters, and it was a 10-day process after mailing the letter and then waiting for the mailed response. Now, e-mail makes it a much faster process. I do wonder if we are reaching the edge of our ability to handle it."

But how do you know if you have this syndrome, which Bost says affects one in four patients, or 30 million women? It often afflicts women between the ages of 25 and 55 with children between the ages of 4 and 16. But others develop it, too, such as people juggling stressful careers or caring for sick relatives, says Bost.

The doctor looks for four red flags:
• Fatigue
• Moodiness
• Weight gain
• Low sex drive

The syndrome, says Bost, is caused by the same chemical imbalance as major depression, but since the imbalance is not quite as severe, he describes the syndrome as "predepression."

Bost says the DSM-IV, a reference guide for mental-health professionals, classifies what he calls the syndrome/predepression as "minor depressive illness" with three to four symptoms of depression of at least two weeks' duration, but he doesn't like that classification. Why? Because the doctor says there is nothing "minor" about the way Hurried Women feel, and depression has negative connotations for many women who don't want to be labeled.

Whatever the malady is called, any woman who exhibits Hurried Woman symptoms should see her doctor for a thorough check-up, says Bost, but she also needs to examine her hurried-life choices.

"It's a lot of stuff that your granny would have told you," says Bost. "Learn to say no; tell your husband to help do the dishes; take your hand off the throttle; smell the coffee; get back on the exercise wagon; get off the Atkins Diet."

Bost's book is one of many that has hit the market recently that address the issue of today's stressed-out woman, including "Perfect Madness: Motherhood in the Age of Anxiety" by Judith Warner and "The Mommy Myth: The Idealization of Motherhood and How It Has Undermined Women" by Susan Douglas and Meredith Michaels.

The Pioneer Press asked a stress expert to read materials from Dr. Bost's book and give us a second opinion.

"I think so many men and women now lead incredibly busy lives … that's the nature of the society we live in," says Mary Jo Kreitzer, Ph.D., R.N. and director of the University of Minnesota's Center for Spirituality and Healing.

"People are juggling a lot of balls. In my mind, the bottom line is that it's so important that people take charge of their health and look at their lives from a perspective of health and wellness. That's what (Bost) is doing in his book," she says.

"Sometimes, I think there's nothing new, it's more how you package it. This is not a medical syndrome, but there's a lot of literature out there on the effect of stress and not eating well and not exercising."

To combat this kind of stress, Bost's prescription for a better life involves seven steps:

Create balance in your body: Start the healing by scheduling a thorough check-up. Take vitamins. Get in some aerobic exercise. Limit sugar, alcohol and caffeine.

Find the right caloric balance: Avoid trendy diets and aim for a 40-30-30 ratio: 40 percent of your diet should come from protein, 30 percent from fats and 30 percent from carbohydrates. It comes down to counting calories, says Bost, which isn't glamorous, but it works: "After years of counseling patients on the subject of weight loss and watching their progress on all kinds of diets, I assure you that calorie counting done properly works well compared to any other diet method I've seen," he writes.

Exercise, no matter what: This is a crucial step for re-energizing a Hurried Woman but often a difficult one for her to find time to do. Her schedule is so busy, and she feels too tired to squeeze in anything more. But Bost says you must expend energy to get more energy. Try something simple to start, like a brisk walk on your lunch break or doing exercise tapes/DVDs at home.

At first, do a minimum of three half-hour exercise sessions weekly and add a session after two or three weeks or push up the time in each session by 10 minutes each week until you see improvement, with a limit of a one-hour session. A side perk of finding time to exercise, says Bost, is that you give yourself the gift of finding time for yourself.

Rekindle the fire: In family life, Bost says, a man sometimes substitutes work for his relationship with his wife; a woman substitutes her relationship with her children for the one with her husband. Hurried women need to learn not to push their men away (and becoming less hurried should perk up your sex drive); men need to remember that doing the dishes or vacuuming will get you more affection than picking up a bouquet of flowers.

Identify your priorities and set reasonable limits: Immediately begin "the year of saying no," says Bost. Learn to limit your activities. After this year, you will gain a better perspective on what you can and want to juggle. Hurried women often lose track of who they are, what's important to them and where they wish to go, Bost says.

Get the best of stress: Why is it so crucial to become unhurried? We've learned to accept our busy, stressful lives, but just because we see that pace as normal doesn't mean it's healthful, says Bost. In fact, those little stresses of everyday life will ultimately have a big toll: Stress can damage hearts, cause blood-pressure problems, Cushing's syndrome and more.

"There are long-term ramifications if you stay hurried," says Bost. "You are going to shorten your life span."

Some good news: In his book, Bost actually prescribes retail therapy to feel better — that's right, ladies, shopping!

"It has to be monitored, but sometimes going out and doing a little shopping for yourself, maybe spending $30, can feel good," says the doctor.

Organize your world: Clutter is stressful, so getting a handle on this really will make you feel less stressed. Also, get a big family calendar and put it where everyone can look at it, says the doctor; set limits on children's activities; delegate chores.

Stephanie Astrup, a stay-at-home mom of three children ages 5, 3 and 6 months, says she is definitely a hurried woman, but she's not sure if she has the Hurried Woman Syndrome. She thinks hurrying is a habit for her, since she feels rushed even if the day isn't jammed full.

"I think I would read this book because even though I already know a lot about the things to do, like exercise and eat well, you need to hear it to remind you of what you should be doing," says Astrup.

"I also need to tell myself that these years, when my children are small, aren't going to last forever. I need to worry less about toys on the floor or milk that has spilled. I am also trying to cut back on activities, like MOPs (Mothers of Preschoolers group) and my sewing group, because I'm going to be vice president of the PTA next year."

For tips on how to reduce stress, visit the University of Minnesota's Center for Spirituality and Healing at www.csh.umn.edu and click on the prompt for "Keeping U well through online learning" near the bottom of the center's home page.

For more information about the Hurried Woman syndrome, visit www. hurriedwoman.com. The site includes Dr. Brent Bost's attitude and mood assessment quiz and a Q&A with him. You also can submit your own question to Bost, who lives in Texas, and is married with four children.

Molly Millett can be reached at mollymillett@pioneerpress.com or 651-228-5505.

Several members of the message boards are writing to the author of this piece and/or the author of the book.  Read their comments here.

Insulin Resistance http://www.xagena.it/news/medicinenews_net_news/
253d812cbfbb77c03b910f9897e9487d.html

Waist circumference to predict insulin resistance

Waist circumference is a strong indicator of the risk of insulin resistance, an early stage in the development of diabetes mellitus and heart disease.

Waist circumference is already recognised as an independent risk factor for cardiovascular disease.

Current guidelines suggest a cut-off of 102 cm in men and 88 cm in women.

Swedish investigators assessed how effectively different anthropometric measurements and biochemical markers used in clinical practice can predict insulin sensitivity. No easy clinical test exists for predicting the insulin resistance of an individual.

Investigators analysed retrospectively data on 2746 healthy volunteers ( 798 male ), aged between 18-72 years, body mass index ( kg/m2 ) from 18 to 60, and waist circumferences from 65 cm to 150 cm.

A waist circumference of < 100 cm excludes individuals of both sexes from being at risk of being insulin resistant.

Waist circumference is a strong independent risk factor for insulin resistance. It replaces body mass index, waist:hip ratio, and other measures of total body fat as a predictor of insulin resistance and explains more than 50% of the variation in insulin sensitivity alone.

The combination of insulin resistance, compensatory hyperinsulinaemia, and abdominal obesity predisposes individuals to generate cortisol and promoting a cushingoid fat distribution by activating 11-beta-hydroxysteroid dehydrogenase in omental adipose tissue.

Waist circumference is a simple tool to exclude insulin resistance and to identify the patients at greatest risk.

High-risk patients would benefit most from lifestyle changes.

Source: British Medical Journal, 2005

XagenaMedicine2005

Steroids Source: http://www.boston.com/news/nation/
articles/2005/04/14/steroid_use_disputed_for_mild_asthma/

Steroid use disputed for mild asthma
By Reuters | April 14, 2005

Patients with mild asthma who ignore their doctor's advice to take steroids to prevent attacks, waiting instead to use an inhaler when they need it, are doing the right thing, researchers said yesterday.

The study of 225 adults, published in the New England Journal of Medicine, found that volunteers who took placebos seemed to do just as well as those who regularly took steroids.

While warning that patients should not self-prescribe medication, some specialists said the study showed a way to save money.

All the patients had mild, persistent asthma, which meant their wheezing, coughing, or chest tightness occurred only two to six days a week or the condition woke them up more than two nights a month.

The findings do not apply to the 16 million people whose asthma is more severe. More than 20 million Americans have asthma.

For those with mild, persistent asthma, current guidelines from the National Asthma Education and Prevention Program recommend daily steroids to prevent symptoms and quick-relief medication via a bronchodilator to treat acute asthma symptoms.

"Our findings suggest that the [National Institutes of Health] guidelines for treating asthma may have gone a little too far in requiring patients with truly mild asthma to take these anti-inflammatory drugs every day," chief author Dr. Homer Boushey of the University of California at San Francisco said.

Boushey said most patients with mild asthma who are given steroid prescriptions stop taking the drugs, because they do not seem to provide an immediate benefit or because they worry about side effects.

"Our study shows that for mild asthma, at least for the short term, this 'folk wisdom' is a safe practice," he said in a statement.

The current guidelines, developed in 1997, are expected to be updated next year.



Newest Bios:
To add or edit your bio, please click here »
Christal Christal is not yet diagnosed. Boise, Idaho
Maureen R Maureen is not yet diagnosed. She has a mass on the adrenal gland. Pensacola, Fl
Sylvia Sylvia is being tested for Cushing's. She has aldosterism, AKA adrenal hyperplasia, and diabetes Mount Airy, North Carolina
Terri Terri has many symptoms but is not yet diagnosed Jacksonville Beach


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Upcoming Conventions, Meetings and Seminars:


April 21, 2005, Third Thursdays.  A new DC Metro Area once monthly meeting for lunch. More info here »

April 25, 2005, Acromegaly Patient Education Day, Massachusetts General Hospital, Boston, MA. Contact: Jamie Lipman Ph: 1-617-724-1838 More info here »

May 3, 2005, Greater Chicago Pituitary Support Group: Prolactinomas. More info here »

May 14, 2005, New England Meeting, Albany, NY. More info here »

May 15, 2005, 11 a.m. to 3:00 p.m., NIH Share the Health: Health and Fitness Expo, Wheaton, MD. More info here »


June 4-7, 2005, ENDO 2005, San Diego. Mainly for physicians, but patients may attend. More info here »

July 21-24, 2005, MAGIC Foundation Convention, Chicago, OHare Marriott. For Growth Hormone patients and their families. More info here »

July 23-31, 2005, Pituitary Awareness Week, Australian Pituitary Foundation, Ph: 02 9594 5550 Email: pituitary@bigpond.com

July 23, 2005, (Australia) NSW APF Patient Education Seminar, Royal Prince Alfred Hospital, Camperdown, Ph: 02 9594 5550 Email: pituitary@bigpond.com

August 6-7, 2005, The Diabetes Insipidus Foundation, Second Annual Conference, The Diabetes Insipidus Foundation, Sheraton Inner Harbor, Baltimore, Maryland USA, Contact: 5203 New Prospect Drive, Ellicott City, MD 21043 USA, Email: info@diabetesinspidus.org, More info here »

September 3, 2005, (Scotland) 6th National Conference, The Pituitary Foundation, University of Edinburgh, Scotland, UK, More info here »

September 7, 2005, (Australia) Annual Scientific Meeting, Endocrine Society of Australia, For health professionals, Perth Convention Centre, WA, More info here »

October 8, 2005, (Australia) APF [Australian Pituitary Foundation] Annual General Meeting, Ph: 02 9594 5550, Email: pituitary@bigpond.com

More upcoming local meetings are listed here »

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