What's New? 

April 6, 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?
(Cortisol) Silence is Golden.

The right exercise for diabetics.
Upcoming Meetings in DC Metro Area, Los Angeles, New England, Albany, Australia, Scotland, Baltimore, San Diego and Chicago; Local Meetings
Read all about them below.

Next Online Newsletter will be Wednesday, April 13
read archived issues here »
Jayne in the paper again!

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

After years, mystery ills diagnosed
April 3, 2005


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.


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/

Cushing's Awareness Day. We are currently petitioning to have April 8 be declared as Cushing's Awareness day. This date was chosen because it was Dr. Harvey Cushing's Birthday.

Print out a sample letter to send to your congress person or senator or download it in Word format.

More information here

See what Jayne has done! She wrote to her representative and she's now in the Congressional Record. She has her first response and it's a fantastic one!

Jayne presented a table full of Cushing's info at her local Health Fair In Fredericksburg, VA. She plans to set up something similar at the NIH Health and Wellness Fair May 15th. More info here »

Double click on any photo to view full-sized.

JayneAwareness1.jpg JayneAwareness2.jpg
JayneAwareness3.jpg JayneAwareness4.jpg

A Message Board area has been added to discuss ideas for making Cushing's Awareness Day a reality. Please do what you can to help the cause! Thank you for helping to make this Cushing's Awareness Day a reality!

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.

Cortisol Source: http://www.hinduonnet.com/thehindu/thscrip/

Silence is golden

Chronic noise affects health, productivity and interpersonal relationships. Getting away from the racket is important for good health, says ARUNA CHANDARAJU.

No Noise Please.

WHEN the Sharmas' six-year-old son Vineet began to get increasingly irritable, prone to throwing tantrums and even perform poorly in his studies, they attributed it to a lot of things. Adjustment problems at his new school, the bad company of the boy next door, or lack of parental attention because both had busy corporate jobs. Anything but the real problem: a chronic-noise environment.

The Sharmas had been living near a big airport for five years now. Following their paediatrician Dr. S. Raghunath Rai's revelation of the root cause of the problem, the Sharmas relocated to a quieter neighbourhood.

Chronic noise

While the levels and dangers of noise pollution are well-documented and everyone knows what an irritant and stressor noise is, what is lesser known is that chronic noise can also cause mental distress, ulcers, migraines, acidity, non-cooperative behaviour, aggression, learning impairment, and even contribute to musculo-skeletal and heart problems.

Tinnitus or a ringing sound within the ears (even when there is no noise in the surroundings) is another consequence.

In fact, experts point to how Noise Induced Hearing Loss (NIHL) is gradually becoming an urban phenomenon. Given the growing number of sources of noise and constant exposure to it, people are at the risk of becoming deaf from all that noise.

Typical offenders are machinery, generator sounds, power tools, vehicles with modified silencers and recreational noise. Which means musicians and DJs in noise-high pubs and clubs or those who frequently perform at high-volume musical nites are prone to NIHL due to continuous exposure. Even audiences at these places are vulnerable.

Even at home, the neighbourhood mela or religious function, blaring film songs from loudspeakers or firecrackers at Diwali harm you.

Effects on health

As Mumbai-based ENT specialist Rajesh Rathod points out: "Eight hours of exposure to 85-dB noise on a daily basis can begin to damage your ears over a period of time."

Other alarming examples: Listening to stereo headsets (at 110 dB), attending a rock concert (at l20 dB, using power tools (at 100 dB), or hearing a gunshot (at 140 to 170 dB) may damage the hearing of some people instantly or after a few exposures.

In fact, a sudden noise exposure can cause a temporary threshold shift or a temporary hearing loss, from which one can recover only after two to three weeks' time.

Permanent hearing loss may also occur from a sudden blast of sound. The pity is that loud, unwanted noise is everywhere.

Especially in metros, where we encounter high levels of noise in traffic, in homes (from our TVs, music systems), malls, markets, restaurants, offices, etc.

Areas around airports and railway stations or noisy factories/manufacturing units are the most vulnerable. All with alarming consequences.

Especially when the noise is louder and over a longer duration.

Increasing stress

"Prolonged exposure to loud noise causes a distortion of the brain biochemistry, disturbances in the endocronological systems and increased pressure on the autonomic nervous system leading to irritability, anger and sadness, insomnia, depression, besides increased heart rate and hypertension," says Dr C.R. Chandrashekar, Head, Department of Psychiatry, National Institute of Mental Health and Neuro-Sciences, Bangalore. He adds that prolonged noise increases fatiguability — the tendency to get tired easily.

Children, he points out, can show adjustment problems at home and school. "They tend to get angry easily, throw tantrums, and are less focussed in their studies and at home, tend to overreact to situations."

As for adults, it leads to stress, or increases existing stress-levels the person is under. With the result, he/she tends to lose his temper more easily, show signs of frustration. This even strains interpersonal relationships.

Delhi-based civil engineer Deepak Somnath explains that, typically, his one-hour drive to and from his office, takes him through high-traffic areas and past noisy and highly crowded markets.

"The blaring horns, the sounds of two-wheelers and three-wheelers as they rev up, and also those hawkers shouting at the top of their voices: I feel more stressed by just these two hours than my eight-hour workday at the office."

He is even increasingly irritable and liable to snap at family members as soon as he reaches home. This was not the case when he worked in small town Indore two years ago explains his wife. And Deepak ruefully agrees.

And 67-year-old Sujatha Shanmughan in Chennai suffers from tinnitus after living eight years next to a factory, which cared little to control the very high noise levels it generated. Confined to bed with a severe illness she had no means of getting away.

She often wonders about the effects on the health of the workers who, being inside the factory, must have been exposed to higher decible levels.

In fact, workplace-environment noise forms a major area of concern in the work of occupational-safety experts: professionals who study how workplaces can be hazardous in various ways. Significantly, even continuous low-level noise can be an insidious stressor.

A study by psychologist and international expert on environmental stress, Gary Evans of Cornell University, revealed that children living in noisier neighbourhoods experienced higher overnight levels of the stress-hormone cortisol, marginally higher blood pressure, and greater heart reactivity in stress tests. Academic performance is also affected.

Other studies show that compared to children from noisier neighbourhoods, children living near airports/railway stations or busy highways tend to have lower reading skills and develop language skills more slowly.

You are not immune even at the workplace. Even safe offices (as opposed to noisy factories or manufacturing units, mentioned above) and white-collar workers are vulnerable.

In another study by Evans, two groups of employees were studied. One worked in a typical open-area office space where people are exposed to `typical 'office noise: employee chatter; typing sounds and noise from fax machines, printers, shredding machines, and ringing desk phones and mobiles. The other group worked in a quiet office with self-contained workspaces.

The first group had high levels of adrenalin (a hormone released by the body under stress) while the second had comparatively low levels. Significantly, they were also much more relaxed and less stressed at the end of their workday.

Noise also hampered performance and productivity. When a puzzle demanding concentration and attention was given to both groups, employees from the `noisy' office-surroundings were discovered to be less diligent and attentive. They even tended to get frustrated and give up more easily than the quiet-office group.

The effect even spills over to the home, researchers discovered. Those from the noisy office were observed to suffer sleep problems, had digestion problems, and displayed irritability, unlike the other group.

© Copyright 2000 - 2005 The Hindu

Diabetes Source: http://rdu.news14.com/content/headlines/?ArID=66565&SecID=2

The right exercise for diabetics

4/1/2005 5:25 AM
By: Ivanhoe Newswire
Mike lagnese

EMore than 18 million Americans live with diabetes. Insulin or oral medications are needed to control the disease. There's something else that's just as important, but only if it's done right.

Exercise is an important part of health. For diabetics, it could be life-saving.

Exercise Physiologist Paul Frickman said, "A single bout of exercise can help lower your blood sugar for 24 to 72 hours." Paul has a few tips.

First, don't exercise under certain types of stress. "If you're blood sugar is too high, if you're sick, if it's too cold or too hot outside, all those are stress and actually could cause your blood sugar to go up," said Paul.

Stress releases hormones like epinephrine and cortisol, which increase sugar levels. Dehydration also raises blood sugar, so drink one cup of water for every 20 minutes of exercise. And it's just as important to keep your level from dropping too low.

Exercise is an important part of health. For diabetics, it could be life-saving. Paul said, "The medication is causing your blood sugar to lower as well as the exercise, so that double impact could significantly lower your blood sugars."

If levels are below 100, eat 15 grams of carbs with protein before you work out. Mike lagnese's blood sugar used to hover around 400; well above the healthy range of 70 to 110.

"I was overweight, tired all the time, always out of breath," said Mike. Then he started exercising. He no longer needs the 180 units of daily insulin that kept him alive.

Mike said, "I feel like I've accomplished something, and I'm really happy." And mike is proof that, for diabetics, exercise may be the next best thing to a magic bullet.

The worst time to exercise? First thing in the morning before you eat or take your medicine.

Insulin resistance is highest in the morning, so the added stress of exercise may cause blood sugar to rise if no medication is on board.

Newest Bios:
To add or edit your bio, please click here »
Elle Elle is not yet diagnosed. Canada
Janie Janie had laparoscopic adrenal surgery in October 2003 Fort Worth, Texas
Kathi K Updated:
Kathi K hopes to have another surgery in June 2005 to cure her Cushing's.
Lori L Lori L has many symptoms Modesto, CA
MaryO Updated:
MaryO has updated her bio to include Growth Hormone and other med changes
Fairfax, VA
DC Metro area
Rachel Rachel has a recurrence of a pituitary tumor that was removed December 15, 2004 Jasper, Alabama
Roxi Updated:
Roxi is not yet diagnosed.
Decatur, GA
Sandy Sandy will have surgery on April 12 2005 to remove the left adrenal and mass. Springford, ON Canada
SherryC Updated:
SherryC has a pituitary tumor on the right side displacing the pituitary to the left.

If you've been diagnosed with Cushing's, please participate in the Cushing's Register »

The information you provide will be used to create a register and will be shared with the medical world. It would not be used for other purposes without your expressed permission. Note: This information will not be sold or shared with other companies.

Lynne Clemens, Secretary of CUSH Org is be the person responsible for the creation of this register. If you have any questions you may contact her at lynnecush@comcast.net. You do not have to be a member of CUSH to fill out this questionnaire, as long as you are a Cushing’s patient. We do not believe that the world has an accurate accounting of Cushing’s patients. The only way to authenticate accuracy is with actual numbers. Your help will be appreciated. Thank you."

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Upcoming Conventions, Meetings and Seminars:

April 8, 2005, Cushing's Awareness Day. This date was chosen because it was Dr. Harvey Cushing's Birthday. Wear your pin with pride!  More info here »

April 9-10, 2005, (Australia) National APF [Australian Pituitary Foundation] Strategic Planning Meeting Weekend, Ph: 02 9594 5550, Email: pituitary@bigpond.com.

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 »

Sign up for notification of local meetings. You need not be a CUSH member to participate.

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