medlineplus.gov

NIHTrusted Health Information

from the National 

Institutes of Health

MedlinePlus Fall 2006

t h e m a g a z i n e

A publication of the National Institutes of Health and the Friends of the National Library of Medicine

Fight Against Diabetes

The Sister Study:

Breast cancer as a family affair

The Children’s Inn:

Hope and healing for 

youngsters and their families

Mary Tyler Moore’s

Easing Arthritis:

A lifestyle solution

page 14

page 6

page 22

page 10
Friends of the National Library of Medicine

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How You Can Help the Library Extend Medical Knowledge
NIH MedlinePlus Fall 2006 1

Letter from the Friends Chairman

 2 Introducing medlineplus.gov

 3 From the Directors

 4 NIH Research News: The New Vaccines

 6 The Place Where 

Hope Lives For one little girl and her 

mother, the Children’s Inn 

is a home away from home.

10 A Relentless Disease: 

Fighting Diabetes An exclusive interview with Mary Tyler 

Moore about her leadership in the 

battle against diabetes

14 Easing Arthritis

New hope for aching joints

18 Understanding Flu What you need to know 

about seasonal flu, bird flu and 

pandemics.

22 The Sister Study

Breast cancer as a family affair.

26 The National Network of Libraries of Medicine

Your National Medical Library Network

28 NIH QuickFinder & In Upcoming 

Issues 

Volume 1 Number 1 Fall 2006

Table of Contents

Medline

the magazine

Plus® NIH

Inside 

Front 

Cover

NATIONAL LIBRARY OF MEDICINE

at the NATIONAL INSTITUTES OF HEALTH

8600 Rockville Pike • Bethesda, MD 20894

www.nlm.nih.gov

www.medlineplus.gov

Donald A.B. Lindberg, M.D. Director, NLM

Betsy L. Humphreys, M.L.S., A.H.I.P. Deputy Director, NLM

Donald West King, M.D. Deputy Director for Research 

and Education, NLM

Robert B. Mehnert Director, Office of Communications 

and Public Liaison, NLM

Kathleen Cravedi Deputy Director, Office of 

Communications and Public Liaison, NLM

Naomi Miller, M.L.S. Manager of Consumer 

Health Information, NLM

Patricia Carson Special Assistant to the Director, NLM

Christopher Klose Magazine Coordinator

Peter Reinecke Strategic Advisor, NLM

Paul G. Rogers Chairman, Friends of the National Library of Medicine

Friends of the NLM

P.O. Box 31130 • Bethesda, MD 20814

NIH MedlinePlus Magazine Editorial Board

Don Detmer, M.D. • Jordan Cohen, M.D. • The Hon. Paul G. Rogers 

Jay Sanders, M.D. • Barbara Redman, Ph.D. • Roger Bulger, M.D. 

Kenneth Forde, M.D. • Leslie Kuhn, M.D.

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Articles in this publication are written by professional journalists. All scientific and 

medical information is reviewed for accuracy by representatives of the National 

Institutes of Health. However, personal decisions regarding health, finance, exercise 

and other matters should be made only after consultation with the reader’s physician 

or professional advisor. Opinions expressed herein are not necessarily those of the 

National Library of Medicine.
MedlinePlus and NIH’s National Library of Medicine

Discover a world of FREE medical resources: 

www.medlineplus.gov

2 Fall 2006 NIH MedlinePlus

Your gateway to the world’s most comprehensive and trusted health care information available is the 

MedlinePlus Web site—www.medlineplus.gov. Explore this valuable free resource, brought to you from 

the world’s largest medical library, the National Library of Medicine at the National Institutes of Health. 

In-depth information on more than 700 

health topics

Interactive tutorials with sound and pictures
NIH MedlinePlus Fall 2006 3

E

xercise is extremely important 

as a regular part of your 

life, and we at the National 

Institutes of Health (NIH) take 

that very seriously in our own 

lives. Exercise is not something that you 

only do when you’re young. You have to 

think of it as a lifestyle that allows you to 

maintain both physical fitness and mental 

fitness at all ages of life.

Throughout my life, I’ve been a 

swimmer. I began swimming when I 

was 3 or 4 years old, and, later, I was a 

competitive swimmer in high school and 

college. Growing up, I had some problems 

with my knees, and I couldn’t run. So, my 

mother said, “Well, if you can’t run, you 

have to go and swim.” And the doctor 

agreed: “You know, swimming would be 

good for you.” I excelled at swimming, and 

I still love swimming today. 

One of the reasons I like swimming is 

because it’s a time of quiet thinking. It’s 

one of those times when you can think 

about something. As with running or 

biking—you can really be with yourself, 

and you don’t have the pressures of the 

outside world. That’s a moment when 

you’re also able to think through things, to 

be in touch with your own soul, which is 

very important. Exercise does that. It’s the 

only time when you can actually do that. 

You feel your body, and it’s refreshing. You 

feel like you’re in touch with yourself.

Make exercise a part of your lifestyle. 

It will reward you every day.

From the Directors

“Think of Exercise as a Lifestyle”

NIH Director Elias A. 

Zerhouni, M.D., leads the 

nation’s medical research 

agency and oversees the NIH’s 

27 Institutes and Centers and 

more than 17,000 employees.

The photos at right are from videos on the medlineplus.gov Web site, showing several NIH 

directors as they exercise to stay physically and mentally healthy. To see more videos, go to 

medlineplus.gov and click on NIHSeniorHealth at lower right; on the next screen, press 

the Click to Begin button and then click on Exercise for Older Adults.

NIH institute directors understand the important health benefits of 

an active, exercise-based lifestyle. The following commentary is taken 

from NIH Director Zerhouni’s exercise video on NIHSeniorHealth.gov.

Richard J. Hodes, M.D.

Director, National Institute on Aging

Raynard Kington, M.D.

NIH Deputy Director

Patricia A. Grady, Ph.D. ,R.N.,

Director, National Institute of Nursing 

Research & Anthony Fauci, M.D.,

Director, National Institute of Allergy 

and Infectious Diseases
4 Fall 2006 NIH MedlinePlus

Research News from the National Institutes of Health

C

hances are that you have 

never come down with a case 

of diphtheria, smallpox or 

tetanus. It is more than good 

fortune or genetic luck of the draw. That’s 

the result of decades of vaccine research 

and implementation, much of it directed 

or funded by the National Institutes of 

Health (NIH). Vaccines take advantage of 

your body’s natural ability to learn how to 

eliminate almost any disease-causing germ, 

or microbe, that attacks it. What’s more, 

your body “remembers” how to protect 

itself from the microbes it has encountered. 

Vaccines are a safe, cost-effective and 

efficient way to prevent sickness and 

death from infectious diseases. Innovative 

technologies have made great contributions 

to recent advances, including the ability to 

“read” and analyze the genomes of diseasecausing organisms. This new knowledge 

and technology are instrumental in 

assisting scientists in creating improved 

vaccines, designing new strategies and 

identifying new candidates to prevent 

diseases for which no vaccines currently 

exist. 

More than 30 vaccines are presently 

available for protection against infectious 

diseases. Edward Jenner produced the 

first vaccine against smallpox in 1798, 

and, today, children in the United States 

routinely receive many vaccines in their 

first few years of life. (See table.)

Recently, new vaccines have been 

announced for a variety of diseases, 

including the following:

 Shingles

Shingles is an outbreak of rash or 

blisters caused by the varicella-zoster virus, 

the same virus that causes chickenpox. 

Following an attack of chickenpox, the 

virus lies dormant in the nerve tissue, with 

the potential of reactivating later in life. 

When the varicella-zoster virus reactivates, 

the viruses multiply and the characteristic 

rash erupts. The first symptom of shingles 

is often burning or tingling pain in one 

location or a specific side of the body. 

Anyone who has had chickenpox is at risk 

for shingles. This year, more than 500,000 

people will develop shingles. 

In May 2006, the Food and Drug 

Administration (FDA) approved use of a 

vaccine to prevent shingles. The vaccine is 

recommended for people 60 years of age 

and older who have had chickenpox but 

who have not had shingles. Researchers 

estimate the vaccine could prevent 250,000 

cases of shingles that occur in the United 

States each year and significantly reduce 

the severity of the disease in another 

250,000 cases annually. 

The Shingles Prevention Study, one of 

the largest adult vaccine clinical trials to 

date, found that a vaccine against shingles 

prevented about half the cases of shingles 

and reduced its severity and complications 

in vaccinated populations that contracted 

the disease. The trial was conducted 

over more than 5 years at 22 study sites 

nationwide and led by the Department of 

Veterans Affairs in collaboration with the 

National Institute of Allergy and Infectious 

Diseases (NIAID).

Stephen E. Straus, M.D., an infectious 

diseases specialist at NIAID and 

Director of the NIH National Center 

for Complementary and Alternative 

Medicine, who participated in the design, 

New Vaccines

 Help Protect You

Important new vaccines have recently been 

approved for use and are already making a 

significant impact in the fight against diseases.

Protect Your Children

Listed below is the basic immunization 

schedule pediatricians follow. For a 

complete schedule, visit www.cdc.gov 

and click on “Vaccines & Immunizations.”

Age Vaccine

Birth Hep B

1 to 4 months Hep B

2 months DTaP, Hib, IPV, PCV

4 months DTaP, Hib, IPV, PCV

> 6 months Influenza

6 months DTaP, Hib, PCV

6 to 18 months Hep B, IPV

12 to 15 months Hib, MMR, PCV

12 to 18 months Var

12 to 23 months Hep A

15 to 18 months DTaP

4 to 6 years DTaP, MMR, IPV

11 years MCV4

11 to 12 years Tdap

College entrants MCV4

DTaP: Diphtheria, tetanus and acellular 

pertussis, Hep A: Hepatitis A, Hep B: Hepatitis B, Hib: Haemophilus influenzae type b, 

Influenza: Flu, IPV: Inactivated poliovirus, 

MCV4: Meningitis, MMR: Measles, mumps 

and rubella, PCV: Pneumococcal conjugate, 

Tdap: Tetanus, diphtheria and pertussis 

booster, Var: Varicella (chickenpox)
NIH MedlinePlus Fall 2006 5

oversight and conduct of the trial, says, 

“These striking results indicate for the first 

time that we can use a vaccine to prevent 

shingles. And among vaccine recipients 

who did get shingles, the episodes generally 

were far milder.”

Pneumonia

Pneumonia is an inflammatory lung 

disease caused by a variety of viruses, 

bacteria and even fungi. Pneumococcal 

pneumonia is an infection in the lungs 

caused by bacteria called Streptococcus 

pneumoniae, also called pneumococcus. 

These bacteria can infect the upper 

respiratory tracts of adults and children 

and can spread to the blood, lungs, middle 

ear or nervous system.

There are no generally effective 

treatments for most types of viral 

pneumonia, which usually heal on 

their own. The pneumococcal vaccine 

protects against 23 types of pneumococcal 

bacteria populations and is effective in 

approximately 80 percent of healthy adults. 

The Centers for Disease Control 

and Prevention (CDC) estimates 

pneumococcus causes 40,000 deaths and 

500,000 cases of pneumonia annually 

in the United States. Annually, there are 

twice as many cases of pneumococcal 

pneumonia in African Americans than in 

whites. The disease is responsible for 3,000 

cases of meningitis (inflammation of the 

lining of the spinal cord), 50,000 cases of 

bacteremia (bacteria in the blood) and 

7 million cases of otitis media (inner ear 

infection) in the United States.

Human papillomavirus (HPV)

On June 8, 2006, the FDA approved the 

use of the first vaccine, Gardasil, to prevent 

infection from four types of the human 

papillomavirus (HPV), which causes 

cervical cancer. 

HPV is one of the most common 

causes of sexually transmitted infection 

(STI) in the world. Health experts 

estimate there are more cases of genital 

HPV infection than any other STI in the 

United States. According to the CDC, 

approximately 6.2 million new cases of 

sexually transmitted HPV infections are 

reported every year. At least 20 million 

people in this country are already infected. 

“Cervical cancer is the No. 2 cancer in 

developing countries, whereas it is a less 

common cancer in the U.S. and other 

developed countries,” says Douglas Lowy, 

M.D., deputy director of the National 

Cancer Institute’s (NCI) Center for 

Cancer Research. “The principal difference 

is attributable to having high quality 

Pap screenings in the developed world, 

whereas this is not available in developing 

countries.”

A second HPV vaccine, Cervarix, will 

be considered by the FDA soon.

 Rotavirus

“Rotavirus is the leading cause of 

severe gastroenteritis in infants and 

young children worldwide” says Dr. Anne 

Schuchat, director of CDC’s National 

Immunization Program. “Nearly every 

child in the United States is infected with 

rotavirus by age 5 and most will develop 

gastroenteritis, leading to a large number 

of physician visits, emergency room visits 

and hospitalizations, with a few deaths. 

Therefore, this vaccine will help reduce 

one of our most common and potentially 

severe childhood illnesses.” 

Each year, rotavirus is responsible for 

more than 400,000 doctor visits, more 

than 200,000 emergency room visits, 

55,000 to 70,000 hospitalizations, and 

between 20 and 60 deaths in U.S. children 

younger than 5 years of age. In developing 

countries, rotavirus is a major cause of 

childhood deaths. 

Rotavirus vaccine will not prevent 

gastroenteritis caused by other viruses, but 

is very effective against rotavirus disease. 

In clinical trials, the vaccine prevented 

59 percent of all causes of gastroenteritis 

hospitalizations, which highlights the 

important role of rotavirus in severe 

childhood gastroenteritis. Complications 

with previous rotavirus vaccines have been 

completely resolved.

 Flu

FDA’s Vaccines and Related Biological 

Products Advisory Committee (VRBPAC) 

met earlier in 2006 to select, in conjunction 

with the CDC, the influenza virus strains 

to be included in the influenza vaccine 

for use in the 2006–07 U.S. influenza 

season. During this meeting, the advisory 

panel recommended that vaccines to be 

used in the 2006–07 season in the United 

States contain the following: an A/New 

Caledonia-like virus, an A/Wisconsin-like 

virus and a B/Malaysia-like virus. 

The influenza vaccine composition to 

be used in the 2006–07 season in the U.S. 

is identical to that recommended by the 

World Health Organization. n

Need more information?

n www.niaid.nih.gov, the Web 

site for the National Institute of 

Allergy and Infectious Diseases 

(NIAID) 

n www.vrc.nih.gov , the Web site 

of NIAID’s Dale and Betty Bumpers Vaccine Research Center
6 Fall 2006 NIH MedlinePlus

Three-year old Channing O’Halloran is one of many 

children who stay temporarily at the Children’s Inn 

at NIH, a home-away-from-home environment, 

while they are treated for a serious disease at NIH.

The Place Where

Hope Lives: The Children’s Inn Comforts Kids and Their Families
NIH MedlinePlus Fall 2006 7

M

The Children’s Inn at NIH is a unique homeaway-from-home for children with serious 

illnesses and their families.

Meet Channing O’Halloran. Before she was 1 year old, she was 

diagnosed with cystinosis, a genetic illness that used to be a 

death sentence for kids before they reached age 10. But her family 

wouldn’t accept that scenario. To get better access to top doctors, 

the O’Hallorans moved to the Gainesville, Fla., area. They also started 

clicking away on the Internet, determined to become cystinosis 

experts. 

Their online sleuthing kept pointing to the name of NIH researcher 

Dr. William Gahl, a leader in the treatment of cystinosis. In November 

2005, the O’Hallorans traveled to NIH in Bethesda, Md., and met with 

Dr. Gahl, who prescribed the therapy that has allowed Channing to 

thrive. Today, she takes tap and ballet, and plays the guitar. But she’s 

still a little girl in danger. Four times a day, she must take Cystagon, a 

drug that rids the body of the harmful crystals that are the hallmark 

of cystinosis. On a recent visit to see Dr. Gahl, Channing and her 

mom stayed at NIH’s Children’s Inn, which houses children (and their 

families) undergoing newly developed therapies at the 

NIH Clinical Center.

With Dr.Gahl: Dr. William Gahl (right) of the National Human Genome Research Institute meets with Lanna (left), Channing’s 

mom, to discuss her daughter’s condition. Pediatric nurse practitioner Gretchen Golas keeps Channing entertained. Gahl is 

encouraged by Channing’s progress and tells Lanna that they don’t need to come back for two years. Gahl is considered the 

nation’s expert on cystinosis. “Of the 500 or so patients in the world who have been identified with the disease, NIH has put me 

in the position to see more than 200,” says Dr. Gahl. “That’s remarkable. A researcher needs to have access to the people who 

have the illness. Here at NIH, the children can come for free, stay for free and be treated for free. There’s nothing to compare to 

that anywhere else.” Without The Inn, many of NIH’s larger pediatric studies simply couldn’t be done.

Asleep in the Children’s Inn: On a 

sunny Wednesday morning, Channing 

is in dreamland in one of the 59 guest 

rooms at the Children’s Inn. The private, 

nonprofit facility on the NIH campus in 

Bethesda, Md., is unique in the United 

States. Its philosophy is that families 

make a difference in the treatment of 

patients, and that the health care team 

must care for the patient 

and his or her family as one. 

Riding the shuttle: Channing and her 

toy cat Snowman take the short bus 

trip from the Children’s Inn to the NIH 

Clinical Research Center, where she’ll 

have her checkup. 

7 a.m.

9:30 a.m.

10 a.m.
8 Fall 2006 NIH MedlinePlus

Channing hugs fellow cystinosis patient, Alex: They could almost pass for twins. 

After seeing the doctor, Channing hugs Alex Weaver of Mechanicsville, Va., who 

also has cystinosis and has also just seen Dr. Gahl. The families of the two children 

became friends while staying at The Children’s Inn. 

Drawing Blood: The blood drawn from 

Channing will show how much cystine 

is in Channing’s white blood cells. If 

there’s too much, crystals form in the 

patient’s organs and shut down their 

function. Today, Channing’s cystine 

counts are in the “normal” range. 

Medicine and mom: The 

emotionally taxing Clinical 

Center visit is over, and 

Channing collapses into a 

nap. Still, Lanna must stay 

on the clock. At the stroke of 

noon, as she does every 

6 hours, she prepares to give 

200 milligrams of life-saving 

Cystagon to Channing, by 

mouth. “I told the doctors, 

tell me what to do to save my 

child and I’ll do it. I’m going 

to do it better than anyone.”

About the 

Children’s Inn

The Children’s Inn at NIH is a 

private, non-profit, familycentered residence for pediatric 

outpatients and their families. 

Its purposes are to keep children together with their families 

during serious illness, reduce 

their stress and facilitate their 

healing through mutual support. The Children’s Inn opened 

its doors in 1990 to receive 

pediatric patients and their 

families. Since then, The Inn has 

been in continuous operation: 

24-hours-a-day, seven days a 

week, 365 days a year. During 

the past 16 years, nearly 6,000 

seriously ill children and their 

families have made almost 

40,000 visits to The Inn. For more 

information, call (301) 496-5672 

or toll free 800-644-4660 or visit 

www.childrensinn.org/.

11:45 a.m.

12 p.m.

11:30 a.m.
NIH MedlinePlus Fall 2006 9

A sunnier Channing emerges after the Clinical Center business: As mom makes 

the bed, preparing the room for the next guest, her elfin daughter dashes around 

the room. We’re going home!

Headed home: Late in the afternoon, mother and daughter await a ride to the 

airport, on a bench in front of The Children’s Inn. They’ll return tonight to 

Hawthorne, Fla., and to husband and father Channing James O’Halloran. 

The day has been hectic but the medical report good. The Children’s Inn has 

helped provide them a home-like haven during their stay at NIH.

2 p.m.

3 p.m.

Two Other Family 

Residential Programs

Ronald McDonald House

The three core programs of the 

Ronald McDonald House Charities 

(RMHC)—the Ronald McDonald 

House, Ronald McDonald Family 

Room and Ronald McDonald Care 

Mobile—are focused on helping 

families in need. The cornerstone 

Ronald McDonald House program 

began in 1974 based on a simple 

idea: Provide a “home-away-fromhome” for families of seriously ill 

children receiving treatment at 

nearby hospitals. Since that time, 

more than 10 million families 

around the world have benefited 

from the comfort provided by a 

Ronald McDonald House.

The Ronald McDonald Family 

Room program extends the comfort of a Ronald McDonald House to 

a hospital setting. The Family Room 

provides a place to escape the 

stress and tension of the hospital. 

For more information, 

visit www.rmhc.org.

Fisher House

The Fisher House program is a 

private-public partnership that supports America’s military in their time 

of need. Because members of the 

military and their families are stationed worldwide and must often 

travel great distances for specialized 

medical care, Fisher House Foundation donates “comfort homes,” built 

on the grounds of major military 

and VA medical centers. These 

homes enable family members to 

be close to a loved one at the most 

stressful times—during the hospitalization for an unexpected illness, 

disease or injury. For more informaStory by Melanie Modlin tion, visit www.fisherhouse.org.

Photography by Veronika Lukasova
A Relentless Illness—

One of America’s most talented and popular actresses 

is also one of the world’s leading champions in the 

fight to control and cure type 1 diabetes.

Mary Tyler Moore and participants at the Juvenile 

Diabetes Research Foundation’s 2005 Children’s 

Congress, held in the nation’s capital.

10 Fall 2006 NIH MedlinePlus

Fighting Diabetes
NIH MedlinePlus Fall 2006 11 

A

As international chairman of the Juvenile 

Diabetes Research Foundation (JDRF) 

for more than 20 years, Mary Tyler Moore 

has helped achieve remarkable advances 

in the understanding and treatment of 

type 1 diabetes—even as she has fought 

to control her own type 1 diabetes. Her 

frequent visits to lobby Congress on 

behalf of research and her highly visible 

public service campaigns have helped to 

increase JDRF’s commitment to research 

from a total of $25 million in 1984 to 

more than $1 billion today. 

Recently, Moore joined with NIH 

and the Friends of the National Library 

of Medicine (FNLM) to help introduce 

NIH MedlinePlus magazine on Capitol 

Hill to gain even more visibility for the 

www.medlineplus.gov 

Web site and its 

extensive diabetes 

educational and 

clinical information 

resources.

Today, many 

people call JDRF 

(www.jdrf.org) 

“Mary’s Foundation,” 

the leading charitable 

funder and advocate 

of type 1 diabetes 

research.

How has diabetes 

affected your life?

Nearly 40 years have passed since 

I was diagnosed with type 1 diabetes. 

During this time, I have tried to take 

“control” of this relentless illness. The 

millions who suffer from diabetes still 

confront the specter of devastating 

complications, despite our best efforts. 

Insulin is not a cure—it is life support, 

enabling us to live our lives until a cure 

is found.

What are the symptoms of type 

1 diabetes, and how can I get 

additional information about this 

disease?

Type 1 diabetes, unlike type 2 diabetes, 

strikes suddenly and cannot be ignored. 

At the time of onset, a person with 

type 1 diabetes feels terribly tired and 

off kilter. Symptoms of the disease can 

vary from person to person and include 

extreme thirst, frequent urination, 

drowsiness, sudden vision changes, an 

increased appetite, sudden weight loss, 

heavy breathing, sweet-smelling breath 

and even unconsciousness. People who 

suspect that either they or someone they 

care for might have diabetes should get to 

a doctor immediately. 

As for additional resources, I 

champion the efforts that are being 

made through NIH MedlinePlus to 

provide easily understandable and 

reliable information 

on behalf of all 

people and their 

families affected 

with diabetes. I am 

honored to be part 

of the launch of this 

new publication. 

It will have a 

positive impact 

on the diabetes 

community 

by providing 

patient education, 

information about 

federally and 

privately supported 

clinical research in human volunteers, 

and directories of health care services 

and facilities.

When you were diagnosed with type 

1 diabetes, did it take a while for the 

reality to sink in?

I was incredulous at first. I was, after 

all, a very healthy and active adult, and I 

didn’t ever expect something like that to 

happen to me. That may be why, initially, 

I wasn’t receptive to the regimen my 

doctors told me I had to follow. But they 

worked hard to make me understand 

that diabetes is a serious disease. When 

Types of Diabetes

Type 1 Diabetes

Type 1 diabetes, formerly called 

juvenile diabetes or insulindependent diabetes, is usually 

first diagnosed in children, 

teenagers or young adults. 

Treatment for type 1 diabetes 

includes taking insulin shots or 

using an insulin pump, making 

wise food choices, exercising 

regularly, controlling blood 

pressure and cholesterol, and 

islet cell transplantation (an 

experimental method to help 

control blood glucose levels 

without insulin injections).

Type 2 Diabetes

Type 2 diabetes, formerly called 

adult-onset or noninsulindependent diabetes, is the most 

common form of diabetes. People 

can develop type 2 diabetes at 

any age. Being overweight and 

inactive increases the chances 

of developing type 2 diabetes. 

Treatment includes taking diabetes 

medicines, making wise food 

choices, exercising regularly, taking 

aspirin daily, controlling blood 

pressure and cholesterol, and use 

of oral or injected insulin.

Gestational Diabetes

Some women develop gestational 

diabetes during the late stages of 

pregnancy. Although this form of 

diabetes usually goes away after 

the baby is born, a woman who 

has had it is more likely to develop 

type 2 diabetes later in life.

—from National Diabetes 

Information Clearinghouse, National 

Institute of Diabetes and Digestive 

and Kidney Diseases, NIH

From Mary ...

a personal perspective on living 

with diabetes.

Wanted:

People of ability in mathematics

possessing knowledge of nutrition

who willingly take direction

and strive for precision.

Must deny the relentless calls

of the bakery

And be prepared to face failure

each day without losing heart.

All others need not apply.
12 Fall 2006 NIH MedlinePlus

that sank in, then I became vigilant about 

managing my diabetes.

You also took the step to make your 

diagnosis public. Why did you decide 

to do that?

When I was first diagnosed, I debated 

about how up front I should be about my 

diabetes, and whether telling colleagues 

might hinder my work as an actor. But 

I also realized that if I did speak out, I 

might be able to help others better cope 

and manage their diabetes. This was 

my thinking when I 

accepted the invitation 

to be the International 

Chairman of JDRF 

in 1984 and be in the 

vanguard of their 

efforts to find a cure 

for diabetes and its 

complications through 

the support of research.

My association 

with JDRF has enabled 

me to both increase 

diabetes awareness and 

to address and improve 

its course for others 

and myself. Through 

testimony before 

congressional 

committees, public 

service announcements, 

appearances in JDRF video reports and 

in person, I am proud to use my visibility 

to highlight the seriousness of diabetes 

and the critical need for increased 

support of research. What continues to 

give me great hope and optimism is my 

confidence that, through research, we can 

find a cure. In fact, for those interested 

in learning more about my life with 

diabetes, I am writing a new book that 

will be available in the spring of 2008.

When it comes to managing your 

diabetes, what part of it depends 

on your attitude and will power? 

How has your natural discipline and 

determination helped you in the 

long run?

I think that attitude and will power 

have an enormous effect on diabetes 

management. I’m fortunate to have had 

professional training as a dancer—which 

nurtured the “natural discipline” you 

describe. Diet and exercise were areas 

where I could and did exert control, with 

positive results. And in getting myself on 

the right track, I also credit the support 

and encouragement of my physician and 

best friend, my husband Robert.

How has diabetes research affected 

your life and those of other diabetes 

sufferers?

Important research contributions 

from the government and public, private 

and not-for-profit sectors conducted 

over more than 35 years have made 

a real difference in the lives of many 

people—including me. For example, 

research, some of which was supported 

by JDRF, has helped to develop laser 

photocoagulation surgery, which arrests 

the progress of diabetic retinopathy and 

has saved me from blindness. 

Research has identified a class of 

drugs to treat, possibly even reverse, 

Preventing Diabetes

The National Institute of Diabetes 

and Digestive and Kidney Diseases 

(NIDDK) suggests these steps to 

prevent or control type 2 diabetes:

n Reach and maintain a reasonable 

body weight—Losing even a few 

pounds can help reduce your risk 

of developing type 2 diabetes 

because it helps your body use 

insulin more effectively. People 

who lose between 5 and 7 

percent of their body weight significantly reduce their risk of type 

2 diabetes. For example, if you 

weigh 200 pounds, losing only 10 

pounds could make a difference.

n Avoid crash diets. Instead, eat less 

of the foods you usually have. 

Limit the amount of fat you eat.

n Increase your physical activity. Aim 

for at least 30 minutes of exercise 

most days of the week. 

n Set a reasonable weight-loss goal, 

such as losing 1 pound a week.

n Take a hard look at the serving sizes of 

the foods you eat. Reduce serving 

sizes of main courses (such as 

meat), desserts and foods high in 

fat. Increase the amount of fruits 

and vegetables. Limit your fat 

intake to about 25 percent 

of your total calories. Your doctor 

or dietitian can help you with 

a meal plan that emphasizes 

weight loss.

n Keep a food and exercise log. Write 

down what you eat, how much 

you exercise—anything that 

helps keep you on track.

n Take your prescribed medications.

Some people need medication 

to help control their blood pressure or cholesterol levels. If you 

do, take your medicines as directed. Ask your doctor whether 

there are any medicines you can 

take to prevent type 2 diabetes.

Mary’s husband, S. Robert Levine, M.D., has chaired 

JDRF’s Government Relations and Clinical Affairs 

Committees of the Board and recently was honored 

by Research!America for his volunteer and advocacy 

for medical and health research.
NIH MedlinePlus Fall 2006 13 

diabetic complications of the kidney. 

And the magic of genetic engineering 

has led to the development of nerve 

growth factors, which may one day be 

the answer to painful neuropathy. There 

is even good reason to believe that we 

are not too far from being able to replace 

our destroyed insulin producing cells 

with new ones. 

Also of great interest is the very 

promising area of diabetes research 

that actually involves delaying the onset of the disease itself. JDRF-funded 

researchers in Europe have shown 

that short-term treatment with an 

antibody, called anti-CD3, can preserve 

enough insulin-producing cells and 

simultaneously decrease the body’s need 

for insulin for at least 18 months—

possibly much longer—in children and 

adults with recent-onset 

type 1 diabetes. This 

“bench to bedside” 

research represents an 

important step forward 

in finding ways to 

prevent and stop type 

1 diabetes by changing 

the clinical course of the 

disease. 

What does the future 

hold for you in terms 

of your advocacy on 

behalf of Americans with diabetes?

I continue to be heartened and 

reassured by the responsiveness of our 

legislative leaders and their willingness to 

address the great needs we bring before 

them. By highlighting the staggering 

personal and financial costs of diabetes 

and the promise of a cure through 

research, JDRF’s message is very effective 

and positive, and so very rewarding for 

me to share with members of Congress 

and have it heeded. n

Need more information 

on Diabetes?

From www.MedlinePlus.gov:

n Interactive Tutorials: Click on 

Interactive Tutorials at upper 

right; on the next screen, under 

Diseases and Conditions, click 

on any of four interactive tutorials on diabetes.

n Health Topics: Click on Health 

Topics at upper left of main 

screen; on the next screen at 

lower right, click on Easy To 

Read; on the following screen, 

click on the “D” in the alphabetical listing; scroll down the next 

screen to find 30 articles, many 

also in Spanish, about diabetes.

Type 2 Diabetes Widespread in Adults

One-Third of People with Type 2 Still Don’t Know They Have It

By Harrison Wein, Ph.D.

In a new analysis of national survey data, researchers found that the prevalence 

of diabetes in U.S. adults is continuing to rise. And despite efforts to raise awareness of the problem, about a third of adults with diabetes still don’t know they 

have it. Diabetes is a group of diseases marked by high levels of glucose in the 

blood. Persistent high levels can lead to blindness, kidney failure, amputations, 

heart disease and stroke. 

Researchers at NIH and the Centers for Disease Control and Prevention (CDC) 

recently analyzed data from a national sample of U.S. adults 20 years old and over 

who took part in the National Health and Nutrition Examination Survey. 

The researchers found that the prevalence of diagnosed diabetes in U.S. adults 

rose from about 5.1 percent in the years 1988–1994 to 6.5 percent in 1999–2002. 

About 2.8 percent of U.S. adults, a third of those who have diabetes, don’t even 

know they have it. The study also found that about a quarter of U.S. adults have 

impaired fasting glucose, a form of pre-diabetes. People with pre-diabetes have 

an increased risk for developing type 2 diabetes, the most common form of 

diabetes, and for heart disease and stroke. If you have pre-diabetes, you may be 

able to prevent or delay type 2 diabetes by cutting calories and increasing your 

physical activity to lose a modest amount of weight. A major study of people 

with pre-diabetes showed that lifestyle changes leading to a 5-7 percent weight 

loss lowered diabetes onset by 58 percent. 

If you have diabetes, controlling your blood glucose, blood pressure and cholesterol will prevent or delay the complications of diabetes.

Mary Tyler Moore (center) cuts the ribbon to kick off 

JDRF’s Walk to Cure Diabetes.
14 Fall 2006 NIH MedlinePlus

Linda Saisselin, 

a hiker once more, 

got relief from her 

osteoarthritis primarily from lifestyle 

changes, including 

weight loss.
NIH MedlinePlus Fall 2006 15 

W

By Mary Anne Dunkin

Research offers new hope 

for people with common 

joint disease.

Easing

Arthritis

When Linda Saisselin was diagnosed with arthritis 

10 years ago, she managed pretty well despite pain 

and swelling, which at that time was confined to her 

hands. She continued to fill out the paperwork required 

by her job as a social worker. She played the piano 

in her free time. But four years later, when arthritis 

affected her knees, pain plagued her every step. Living 

in New York City, Saisselin relied on walking and public 

transportation to get her everywhere. But walking 

became more and more difficult. Getting on and off 

the subway was even worse. Medicines to control the 

pain affected her concentration at work. Finally, when 

she could bear the pain no more, she had a total joint 

replacement—surgery to replace her own damaged 

joint with a new artificial one—on the more painful of 

the two knees. Today, at 65, Saisselin enjoys hiking with 

her husband and holding her new grandson. Except 

for occasional swelling and pain in her hands, she is 

practically pain free.
16 Fall 2006 NIH MedlinePlus

ACommon and Growing Problem

Linda Saisselin is one of an estimated 

43 million Americans with arthritis, a 

problem that is becoming more common 

as the population ages. By 2030 as many as 

67 million Americans (one-fourth of 

the adult population) will have arthritis, 

according to CDC estimates. For many, 

that will mean daily pain, high medical 

costs and difficulty holding a job or doing 

everyday tasks, such as going up stairs, 

getting in and out of chairs, opening jars 

and buttoning shirts. 

Although commonly referred to as if it 

were a single disease, arthritis is actually 

a term used for more than 100 conditions 

that cause pain, swelling and stiffness 

in the joints. (See “Forms of Arthritis,” 

at left.) Osteoarthritis (OA), the type 

Saisselin has, is the most common of the 

diseases. It affects 21 million Americans—

about 10 times as many people as the 

second most common, rheumatoid 

arthritis (RA). RA is more common in 

women than men. It usually starts in the 

middle adult years. OA affects both sexes 

almost equally. It grows more common 

with age. One-third of people 65 and 

older have OA of the knee that can be seen 

on X-ray.

In OA, joint cartilage—the smooth, 

spongy tissue that covers the ends of the 

bones where they meet to form joints—

breaks down. Bony growths, called spurs, 

form in the joints. The joints most likely 

to be affected are the hips and knees and 

those of the fingers, neck and lower back. 

In RA, the body’s immune system—which 

normally defends us against invaders 

such as viruses and bacteria—attacks the 

membrane lining the joints. The joints 

usually affected are those of the hands, 

wrists, shoulders, elbows, knees, ankles 

and feet. If not stopped, this attack can 

cause joint damage and deformity.

In recent years, research has led to great 

advances in treating RA. For many people, 

drugs that modify the immune system 

improve symptoms and prevent joint 

damage. But for OA, treatment does little 

to help the disease’s progression. For most 

people, treatment consists of medicine to 

control pain followed by surgery when 

pain is no longer controllable. 

But there’s hope on the horizon. Many 

scientists, including David T. Felson, M.D., 

MPH, chief of the Boston University 

Clinical Epidemiology Research Training 

Unit, believe research holds clues for better 

treating the disease and perhaps more 

importantly, preventing its development.

“I was always interested in things 

that were really common and where 

prevention was possible,” says Dr. Felson, 

who has authored some 140 published 

studies on OA. Most of those studies 

were funded by the National Institute 

of Arthritis and Musculoskeletal and 

Skin Diseases (NIAMS). “That wasn’t 

possible in rheumatoid arthritis, although 

rheumatoid arthritis treatment is 

quite wonderful now. In osteoarthritis, 

treatment isn’t so wonderful now, but 

prevention is a bigger opportunity.”

The good news, says Dr. Felson, is 

that strategies to prevent the disease are 

the same ones that may help prevent 

its progression. In most cases the best 

medicine for osteoarthritis isn’t medicine 

at all, but measures you can take and 

lifestyle changes you can make yourself.

Non-Medicine Relief 

For Saisselin, improvement came 

not just from her surgery, but from the 

physical therapy and lifestyle changes that 

followed. “I saw so much benefit from 

physical therapy that the physical therapist 

Forms of Arthritis

Osteoarthritis (OA)—the form of 

arthritis typically occurring during 

middle or old age, this is a joint disease 

that mostly affects cartilage, the

slippery tissue that covers the ends of 

bones in a joint. In OA, the top

layer of cartilage breaks down and 

wears away. This allows bones under 

the cartilage to rub together. The rubbing causes pain, swelling and loss of

motion of the joint.

Rheumatoid Arthritis (RA)—a usually 

chronic disease that is considered an

autoimmune disease—caused by a 

person’s immune system attacking his 

or her own body tissues. It causes pain, 

stiffness, inflammation, swelling and,

sometimes, destruction of joints.

Gout—a form of arthritis that occurs 

when uric acid, a bodily waste product, 

deposits as sharp crystals in the joints. 

Some 2.1 million Americans have gout.

Lupus—a form of arthritis, like rheumatoid arthritis, in which the immune 

system attacks the joint tissue. In lupus, 

the attack may also affect the skin, 

blood, nervous system and internal 

organs. Lupus affects 9 to 10 times 

as many women as men. It typically 

begins during the early-adult years. 

Juvenile arthritis—arthritis that is 

diagnosed before age 16. The most 

common form of juvenile arthritis, 

juvenile rheumatoid arthritis, affects 

between 30,000 and 50,000 children 

nationwide. 

Today, Linda Saisselin takes joy in holding her new grandson—pain free.
NIH MedlinePlus Fall 2006 17 

suggested it would be good for me to join 

a gym,” she says. “Then, after I joined the 

gym, I started thinking, ‘I just exercised 

for an hour, and now I’m going to put a 

cookie in my mouth?’”

As a result of her new exercise program 

and approach to eating, Saisselin lost 25 

pounds. By the time she went back to the 

doctor for her six-month check-up, she 

realized the pain in the knee not replaced 

was gone, too. 

Arthritis specialists, including Dr. 

Felson, say weight loss is one of the best 

things people can do for OA—either to 

prevent or ease it. “What we have found 

is that at every level of weight, a little 

bit higher increased the risk of OA for 

women,” he says. “So if you take normalweight women and compare them to very 

thin women, normal-weight women are 

at higher risk.” Conversely, he says, at every 

level of weight, if you lost a little weight, it 

would decrease your risk. And if you had 

pain in your knees it would likely help 

with that. 

What’s Ahead? 

Other key areas of NIAMS-supported 

OA research involve understanding the 

basic processes of the disease and looking 

for drugs that might help rebuild lost joint 

cartilage. Researchers are also working to 

identify biomarkers—signs in the body’s 

tissues, blood or cells that can enable 

doctors to determine what is happening 

or going to happen in the body. Dr. Felson 

believes one day doctors will be able to tell 

from biomarkers—such as a specific gene 

or low vitamin K levels—who is at greatest 

risk of suffering joint damage. Then they 

can prescribe preventive therapies for 

those people. 

In the meantime, preventive measures 

such as losing weight (if necessary), 

exercising and eating more broccoli 

are good ideas for everyone. And, says 

Dr. Felson, they may well prevent more 

than arthritis. n

Need more information 

on Arthritis ?

From www.MedlinePlus.gov:

n For a slideshow with sound and 

pictures: Click on Interactive 

Tutorials at upper right; on the 

next screen, under Diseases and 

Conditions, click on Arthritis, 

Rheumatoid Arthritis, or 

Osteoarthritis.

n For more on Arthritis: Click on 

Health Topics at upper left of 

main screen; click on A, scroll 

down to Arthritis. Under 

From the National Institutes 

of Health, click on Do I Have 

Arthritis?

Arthritis researchers like Dr. David Felson are encouraged by the 

positive effects lifestyle changes can have, especially in the treatment 

of osteoarthritis.

What you can do for OA

Promising and potential OA therapies include: 

Strengthening exercises: Research has shown a connection between the 

risk of knee OA and the strength of the quadriceps, the long muscles of the 

thighs. Exercise to strengthen those muscles can not only reduce the risk 

of OA but can ease the pain of existing OA. Swimming, walking and weight 

lifting are good exercises.

Braces, sleeves and taping: When muscles alone can’t properly support 

the knees, research shows that neoprene sleeves, braces and taping can 

relieve OA pain. 

Medicines: For pain relief, doctors usually start with acetaminophen 

because the side effects are minimal. If acetaminophen does not relieve 

pain, then non-steroidal anti-inflammatory drugs (NSAIDs) such as 

ibuprofen and naproxen may be used. In addition, the COX-2 inhibitor 

celecoxib may be used. These medicines reduce inflammation similarly 

to traditional NSAIDs, but they cause fewer gastrointestinal side effects. 

However, these medications occasionally are associated with harmful 

reactions ranging from mild to severe. Corticosteroids, hyaluronic acid 

and topical creams are also used.

Eastern medicine: NIAMS-supported research has shown that 

acupuncture—the placement of thin needles at specific points on the 

body—is effective for OA pain. 
18 Fall 2006 NIH MedlinePlus

Understanding 

FluBy Bonny McClain
T

The cooler evenings, changing of the 

leaves and return to school signify that 

autumn is upon us. They also mean 

that more people are thinking about the 

coming flu season. It is time to gear up for 

seasonal influenza and to make sure you 

understand all the talk about bird (avian) 

flu and pandemics.

The flu season in the United States 

typically ranges from November through 

March, but it is never too early to be 

prepared.

Influenza, or the flu as it is often 

called, is a contagious disease caused by 

the influenza virus. Influenza attacks the 

respiratory tract in humans (nose, throat 

and lungs), has the potential to cause mild 

to severe illness and at times can lead to 

death. The flu is different from a cold, 

and typically comes on suddenly and may 

include the following symptoms:

n fever (usually high) 

n headache 

n extreme tiredness 

n dry cough 

n sore throat 

n runny or stuffy nose 

n muscle aches 

n stomach symptoms, such as nausea, 

vomiting and diarrhea, also possible; 

more common in children than 

adults 

According to the Centers for Disease 

Control and Prevention (CDC), influenza 

accounts for approximately 36,000 deaths 

and more than 200,000 hospitalizations 

every year in the United States. It is among 

America’s most lethal killers simply because 

the virus infects so many people—some 5 

to 20 percent of the U.S. population every 

year. (For information on new influenza 

vaccines, see page 5 in this issue.)

Influenza Viruses

There are three types of influenza 

viruses with the ability to infect humans. 

They are designated A, B and C. Only 

influenza types A and B cause epidemics 

of illness that typically occur every winter. 

Whether the topic is seasonal influenza, bird flu or something called 

a pandemic, everyone seems to be searching for answers about how 

to avoid them all. One of your best defenses is to understand them.

National Institute of 

Allergy and Infectious 

Diseases (NIAID)

NIH MedlinePlus Fall 2006 19 
How Does Seasonal Flu Differ From Pandemic Flu?

Seasonal Flu Pandemic Flu

Outbreaks follow predictable seasonal patterns; 

occurs annually, usually in winter, in temperate climates Occurs rarely (three times in 20th century—last in 1968)

Usually some immunity built up from previous exposure No previous exposure; little or no pre-existing immunity

Healthy adults usually not at risk for serious complications; 

the very young, the elderly and those with certain 

underlying health conditions at increased risk for serious 

complications

Healthy people may be at increased risk for serious 

complications 

For additional information on seasonal flu visit: http://www.hhs.gov/flu/.

Influenza type C usually does not cause 

symptoms or may cause a very mild 

respiratory illness. This type does not have 

the severe public health impact of types 

A and B. Efforts to control the impact of 

influenza are directed at types A and B.

Currently, different strains circulate 

globally: three type A viruses and one 

type B. Type A viruses are divided into 

subtypes based on differences in two viral 

proteins called hemagglutinin (H) and 

neuraminidase (N). The current subtypes 

of influenza A are designated A(H2N1) 

and A(H3N2).

Influenza type A viruses undergo 

two kinds of changes. One is a series of 

mutations that occur over time and cause 

a gradual evolution of the virus. This is 

called antigenic “drift.” The other kind 

of change is an abrupt change in the 

hemagglutinin and/or the neuraminidase 

proteins. This is called antigenic “shift.” 

In this case, a new subtype of the virus 

emerges suddenly. Type A viruses undergo 

both kinds of changes; influenza type B 

viruses change only by the more gradual 

process of antigenic drift.

This constant changing of the virus 

allows it to evade the immune system of 

its host, so that people are susceptible to 

influenza virus infection throughout their 

lifetime. For example, a person infected 

with influenza virus develops antibodies 

against that virus. An antibody is a protein 

produced by the body’s immune system. 

The protein recognizes and helps fight 

infections, such as the influenza virus and 

other foreign substances in the body. As 

the virus changes, the “older” antibody 

no longer recognizes the “newer” virus, 

and infection can occur again. The older 

antibody can, however, provide partial 

protection against the virus and may result 

in a milder infection.

Influenza viruses can also emerge that 

have the ability to infect species other than 

their natural reservoirs, such as migratory 

birds. These viruses can infect domestic 

poultry or pigs, and rarely, humans. When 

animal viruses develop the ability to infect 

humans, these infections usually are not 

easily spread into the human population. 

However, the virus has the ability to mutate 

in a manner that may allow humanto-human transmission to occur more 

easily. The concern is that an animal and 

human influenza may infect a person or 

animal simultaneously, allowing the genes 

between the viruses to be exchanged. This 

would potentially yield a virus that would 

be readily transmitted between humans, 

but the human population would have no 

immunity. This example of antigenic shift 

is the likely source of a global influenza 

pandemic.

What Is Bird Flu?

The National Institutes of Health 

(NIH) has increased influenza research at 

least five-fold, from $20.6 million in 2001 

to approximately $119 million in 2005. 

Dr. Richard Webby is part of a research team studying 

the development of new strains of flu, including avian (bird) flu.

20 Fall 2006 NIH MedlinePlus
NIH MedlinePlus Fall 2006 21 

Research efforts have discovered three 

known “A” subtypes of influenza viruses 

(H1N1, H1N2 and H3N2) currently 

circulating among humans. It is likely that 

some genetic component or components 

of current human influenza A viruses 

originally came from birds. The risk from 

avian influenza is generally low for the 

majority of people because the viruses 

do not usually infect humans. H5N1 is 

one of the few avian influenza viruses to 

have crossed the species barrier to infect 

humans, and it is the most deadly of those 

that have crossed the barrier.

Most cases of H5N1 influenza infection 

in humans have resulted from contact 

with infected poultry (e.g., domesticated 

chicken, ducks and turkeys) or surfaces 

contaminated with secretion/excretions 

from infected birds. Currently, the spread 

of H5N1 virus from person to person 

has been limited and has not continued 

beyond one person. Because all influenza 

viruses have the ability to change, scientists 

are concerned that H5N1 virus one day 

could be able to infect humans and spread 

easily from one person to another. 

“The avian flu interacts in a way that 

human influenzas do not,” says Richard 

Webby, Ph.D., a research scientist at St. 

Jude Children’s Research Hospital in 

Memphis, Tennessee. He is part of a highly 

regarded research team, funded in part 

by the NIH’s National Institute of Allergy 

and Infectious Diseases (NIAID), that 

is studying emerging flu viruses and the 

development of flu vaccines to stop them. 

Currently, H5N1 is transmitted to 

humans through close contact with 

infected chickens. But if the virus acquires 

a mutation that enables it to pass directly 

from person to person like the annual 

human influenza does, the resulting 

pandemic could be disastrous, notes 

Preventing Influenza

Because flu viruses spread in respiratory droplets distributed by coughing and 

sneezing, they readily spread from person to person. Additionally, people may 

become infected by touching surfaces contaminated with flu virus and then 

touching their mouths and noses. Most healthy adults may be able to infect 

others as soon as one day before symptoms develop and up to five days after 

actually becoming sick. That means that you can pass on the flu to someone 

else before and after you know you are sick. It is important to avoid close contact with people who may have influenza. If you are sick, keep your distance 

from others and, if possible, stay home from work, school and other activities.

You will help prevent the spread of germs and protect others from catching 

the flu. By covering your mouth and nose with a tissue when coughing or 

sneezing, you may help prevent those around you from getting the flu. Frequent hand washing will also help protect you and others from germs. In the 

United States, the primary option for reducing the effect of seasonal influenza is 

through annual vaccination.

Robert G. Webster, Ph.D., a colleague of 

Dr. Webby’s and co-author of a recent 

research paper on H5N1.

“Our findings tell us that the best way 

to prevent such an outbreak is to control 

H5N1 at its source—domestic poultry 

in southern China,” Webster says. “Early 

detection of the virus and large-scale 

culling of infected poultry is one of the key 

strategies for controlling highly pathogenic 

strains of H5N1. Control measures have 

been less effective in China, Indonesia and 

Vietnam; and the problem that has allowed 

the virus to take root in those countries 

and repeatedly jump from poultry to other 

species, including humans, has not been 

solved.” n

Need more information 

on Flu?

MedlinePlus.gov:

n For a slideshow with sound and 

pictures: Click on Interactive 

Tutorials at upper right; on the 

next screen, under Diseases and 

Conditions, click on Influenza.

n For treatment of Flu: Click on 

Health Topics at upper left of 

main screen; click on F, scroll 

down to Flu. Under Treatment,

click on Flu Drugs.
22 Fall 2006 NIH MedlinePlus

Tina (left) and Wanda Hall

One day in April, after my sister returned 

from a trip, she called to inform me that 

she had discovered a lump under her left 

arm. She made an appointment to have 

it checked out and, after two weeks, my 

sister had confirmation that it was, in fact, breast cancer. We 

discussed the treatment recommended by her doctor.

One Sister’s Story

continued on page 24

By Tina Hall

Sister Study participant
For thousands of women whose sisters have or have had breast 

cancer, the Sister Study is helping uncover clues that may 

ultimately eliminate this dreaded disease.

All in the Family:

The Sister Study

Principal Investigator, The Sister Study

Chief, Epidemiology Branch

The National Institute 

of Environmental Health Sciences (NIEHS)

We all know that breast cancer does not discriminate. Whether a woman is in her 30s or over 65, 

Asian American or African American, executive 

or laborer, this disease is a major health concern 

for women everywhere. When diagnosed most women ask, 

“Why and how did I get this disease? Is it something I did or 

was exposed to?” 

Unfortunately, as of today, there is no clear answer. Wouldn’t 

you like to know if breast cancer is caused by something 

women come in contact with at work, at home or in their 

communities? That’s what the Sister Study is trying to answer.

The Sister Study is a nationwide research study of sisters 

of women who have had breast cancer, being conducted by 

the NIH’s National Institute of Environmental Health Sciences 

(NIEHS). The purpose of the Sister Study is to learn how the 

environment and genes may interact to affect the chances 

of getting breast cancer. This long-term observational study 

is specifically looking at variations in genes that affect the 

biologic response to exposures to certain chemicals, foods and 

hormones. Sisters of women with breast cancer have a special 

interest in participating because they have about twice the risk 

of developing breast cancer themselves, compared with the 

general population.

We’ve enrolled more than 27,000 participants, but need 

thousands more. With a goal of enrolling 50,000 women by 

September 2007, our team of researchers cannot find the 

causes of breast cancer without the participation of a diverse 

cohort of women. We are committed to enrolling women from 

all backgrounds, occupations, races, ethnicities and regions.

Dr. Anna Nápoles-Springer, assistant adjunct professor at 

the University of California, San Francisco, learned about the 

Sister Study at a meeting for Redes En Acción, an organization 

battling cancer among Latinos. “I was greatly encouraged to 

learn of the tremendous efforts being made by the Sister Study, 

nationally and at the grassroots level, to enroll ethnic minority 

women, since historically we have not been well represented in 

research,” says Dr. Nápoles-Springer. “Only by participating can 

we be confident that the results will apply to women such as 

ourselves, so that our communities can benefit.”

Women ages 35 to 74 may be eligible to join the Sister 

Study if (1) their sister (living or deceased), related to them by 

blood, had breast cancer; (2) if they themselves have never had 

breast cancer; and (3) if they live in the United States or Puerto 

Rico. 

The Sister Study has made participation as convenient as 

possible. At the beginning, participants answer telephone 

and written surveys and provide blood, urine, household dust 

and toenail samples. The study is the first of its kind to collect 

such extensive and detailed information about environmental 

exposures. After that, our researchers contact participants once 

a year, for 10 years or more, to learn about changes in their 

health, lifestyle or environment. Participants are not required 

to take any medications, undergo any treatments, or make any 

changes in their daily lives.

We are inviting women and physicians to help us spread the 

word to those affected by breast cancer. The study’s researchers 

and participants want to find the causes of breast cancer so that 

future generations, including the daughters, granddaughters 

and nieces of women, don’t have to experience the disease.

The Sister Study has free, multiethnic brochures available for 

distribution, and is available in English and Spanish. 

NIH MedlinePlus Fall 2006 23 

By Dale Sandler, Ph.D.

Want to Volunteer for the Sister Study?

To volunteer or learn more about the Sister Study, 

visit the Web site www.sisterstudy.org; for Spanish, 

visit www.estudiodehermanas.org. A toll free number 

is also available: 1-877-4SISTER (877-474-7837). Deaf or 

hearing-impaired women may call 1-866-TTY-4SIS.
I

n 2006, an estimated 213,000 women will have been 

diagnosed with invasive breast cancer, and nearly 41,000 

women will die from the disease. Although breast cancer 

can strike any woman, it is older women, African Americans, the poor and those with limited health care access 

who are disproportionately affected. 

Over the past three decades, intensive research by NIH’s 

National Cancer Institute (NCI) has been applied to all aspects 

of breast cancer and led to many important discoveries:

n how a healthy breast cell becomes cancerous

n how breast cancer spreads

n why some tumors are more aggressive than others

n why some women suffer more severely 

and are more likely to die of their disease

Many of the lessons learned have been applied to understanding ways to prevent the disease before it even starts. One 

of the best ways to prove that a drug or therapy can prevent 

a disease is to conduct a large, randomized trial. Often these 

trials require the enrollment of thousands of women to make 

certain that the results are valid and can be applied to most 

women. 

Since the 1980s, the NCI, in conjunction with the National 

Surgical Adjuvant Breast and Bowel Project (NSABP), has undertaken two large-scale trials for the prevention of breast cancer.

First was the Breast Cancer Prevention Trial (BCPT), which 

included more than 13,000 women at increased risk for breast 

cancer. The BCPT demonstrated the value of the drug tamoxifen in reducing the number of new cases of the disease. The 

final study analysis was released in November 2005.

“The BCPT should be viewed not only as the first study that 

demonstrated that breast cancer can be prevented, but also as 

the beginning from which a new paradigm for breast cancer 

prevention evolved,” says Bernard Fisher, M.D., principal investigator for the trial. “Groups of women at increased risk 

 At that time, I was the strong and 

supportive sister. Once I hung up the 

phone, I began to wonder, “Will I 

have to take care of her; Will my two 

nephews come to live with me or go 

live with their father; are my sister’s 

affairs in order? We had been through 

this with our mother, who had been 

diagnosed with colon cancer. And our 

lives had changed rapidly in order to 

provide the care our mother needed 

in the months before she passed.

I started to think of how similar 

our health issues are among the 

things we share. We were both being 

monitored for colon cancer. I didn’t 

know what to expect, but I did know 

that I would be there for her. My 

sister was a trouper. She kept her head 

up and maintained a positive attitude. 

She used humor to deal with the hard 

things, like the loss of her hair. We 

began to increase our phone calls and 

had a few more visits than in the past. 

I reassured my sister of how proud I 

was of her and how beautiful she is. 

Now, Wanda has completed 

her chemotherapy and radiation 

treatments. Her hair is growing back, 

and she has regained her figure. 

My sister is very active in her local 

chapter of Sisters Network, Inc.

I became involved in the Sister 

Study at the invitation of my sister. 

Wanda cares enough about me and 

other women that she would like 

to ensure that all women are aware 

of the importance of prevention, 

treatment and cure. We talk about 

the need for women to know that 

breast cancer can be hereditary, and 

that early detection is vital through 

24 Fall 2006 NIH MedlinePlus

Preventing Breast Cancer:

Making Progress

By Michael Miller

continued from page 22
Need more information 

on Breast Cancer ?

From www.MedlinePlus.gov: 

n For a slideshow with sound 

and pictures: Click on 

Interactive Tutorials at upper right; on the next screen, 

under Diseases and Conditions, click on Breast Cancer.

n For more on Breast Cancer: 

Click on Health Topics at upper left of main screen; click 

on B, scroll down to Breast 

Cancer. Under From the National Institutes of Health,

click on What You Need to 

Know about Breast Cancer.

for breast cancer, who could derive a net 

benefit from receiving tamoxifen, have 

been clearly defined.” 

The study also showed proof of a 

benefit from tamoxifen beyond the time a 

woman is taking the pills, notes Leslie Ford, 

M.D., associate director for NCI’s Division of 

Cancer Prevention and co-author 

of the study. 

Based on the success of the BCPT and 

results of reports in the medical literature, 

the Study of Tamoxifen and Raloxifene 

(STAR) trial was started in 1998. That study 

enrolled more than 19,000 women to 

compare the effects of these two drugs 

in reducing the incidence of breast cancer, 

and found a reduction in risk of developing 

breast cancer for both drugs similar to the 

reduction found for Tamoxifen alone 

in the BCPT. 

Studies, such as BCPT and STAR, involve 

women who have not had breast cancer, 

but are at high risk of developing the disease. Most breast cancer prevention research, thus far, has been based on evidence 

linking the development of this disease, in 

many cases, with exposure to the hormone 

estrogen. The focus of recent breast cancer 

prevention studies has been on testing 

the effectiveness of drugs called selective 

estrogen receptor modulators (SERMs). 

SERMs are drugs that have some antiestrogen properties and some estrogenlike properties. Their anti-estrogen activity 

may help reduce the risk of breast cancer 

by blocking the effects of estrogen on 

breast tissue. 

Now that the BCPT and STAR have 

shown that SERMs can effectively reduce 

the risk of developing breast cancer, NCI 

and NSABP are developing a trial to see if 

a newer type of drug, called an aromatase 

inhibitor, can do an even better job of 

preventing breast cancer than the SERMs. 

Aromatase inhibitors stop an enzyme 

called aromatase from turning androgen 

into estrogen. Investigators are currently in 

the planning stages of this trial, and enrollment could begin as 

early as 2007.

breast self-examination and regular 

mammograms. 

This research is especially 

important for women of color, 

whether African American, Hispanic, 

Native American or Asian American. 

There is not enough information 

about minority women, so we are 

unsure of what to do, we are afraid of 

not understanding what the doctor 

is telling us, and we infrequently 

participate in research studies. Breast 

cancer doesn’t have to be a death 

sentence. The more researchers know, 

the better they can predict or prevent 

this from affecting so many women. 

Sisters have a common bond in their 

genetic makeup. 

The Sister Study enables 

researchers to look at the 

environmental and genetic issues that 

may contribute to the development 

of breast cancer. This research is only 

beneficial if they have committed 

participants. I invite you to get 

involved, not only for yourself but 

for generations of women to come. n

NIH MedlinePlus Fall 2006 25 

Genetic Testing

Approximately 5 to 10 percent 

of women who develop breast 

cancer have a hereditary form 

of the disease. Alterations in 

certain genes make some women 

more susceptible to developing 

breast and other types of cancer. 

Inherited alterations in the genes 

called BRCA-1 and BRCA-2 (short 

for breast cancer 1 and 2) are 

involved in many cases of hereditary breast and ovarian cancer. 

Testing is available that will 

determine if there are changes in 

the BRCA-1 or BRCA-2 genes. For 

more information, go to www.

medlineplus.gov and type “BRCA” 

in the Search box.
26 Fall 2006 NIH MedlinePlus

T

he world’s largest medical 

library is the National Library 

of Medicine, located on the 

300-acre campus of the National 

Institutes of Health in Bethesda, Md. 

Unfortunately, not all people can visit 

Maryland to use NLM’s vast array of 

books, journals and other resources. But 

thanks to the Internet, people around the 

country can access an amazing amount of 

reliable health information from home, 

work or school, free of charge, 24/7. 

And the National Network of Libraries 

of Medicine (NN/LM) exists to help 

Americans do just that.

NN/LM is a nationwide partnership 

of health sciences libraries, information 

centers, public libraries and communitybased resource centers. Administered by 

the National Library of Medicine, the 

Network consists of eight Regional Medical 

Libraries, 160 Resource Libraries and 

over 5,000 members. Together, Network 

libraries strive to improve the health of all 

American citizens.

“The World Wide Web lets us share 

reliable health information with people 

around the world through MedlinePlus,” 

says NLM Director Dr. Donald A.B. 

Lindberg. “But we have another important 

‘web’ that is not as well known, and that’s 

the National Network. The Network’s 

partner libraries give NLM a vast reach, 

from cities to rural areas and even across 

oceans to our users in Alaska, Hawaii 

and the territories. The members help 

spread the word that good information is 

available, and there’s a ripple effect as that 

word goes out to consumers and health 

professionals nationwide.”

NN/LM Network members work 

together to make sure that the latest and 

most accurate biomedical information is 

available to both health professionals and 

the public. 

The Regional Medical Libraries (see 

map) coordinate a variety of services 

for the Network’s eight geographic 

regions. Working cooperatively with 

the members of the Network as well as 

community-based organizations, faithbased organizations, tribal colleges, public 

health agencies and other institutions, they 

promote good health information and 

the many online resources of the National 

Library of Medicine, such as MedlinePlus. 

Free RML-sponsored MedlinePlus 

workshops and presentations introduce 

health professionals and the public to a 

wealth of reliable and timely biomedical 

information in English and Spanish. n

For further information on the National 

Network of Libraries of Medicine call 

1-800-338-7657, which will connect you 

to your Regional Medical Library, or visit 

the NN/LM Web site at http://nnlm.gov.

The National Network 

of Libraries of Medicine

Bringing the World of Medical Information to Your Neighborhood By Angela B. Ruffin, Ph.D., 

Head, NN/LM National Network Office

Puerto Rico

USVI 

1. Middle Atlantic Region: New York University

2. Southeastern/Atlantic Region: University of Maryland at Baltimore

3. Greater Midwest Region: University of Illinois at Chicago

4. MidContinental Region: University of Utah

5. South Central Region: Houston Academy of Medicine

6. Pacific Northwest Region: University of Washington

7. Pacific Southwest Region: University of California, Los Angeles

8. New England Region: University of Massachusetts

8

1

2

3

4

5

6

7

The National Network of Libraries of Medicine

(NN/LM)

1 Middle Atlantic 

Region: New York 

University

2 Southeastern/

Atlantic Region: 

University of Maryland at Baltimore

3 Greater Midwest 

Region: University 

of Illinois at Chicago

4 MidContinental 

Region: University 

of Utah

5 South Central Region: 

Houston Academy 

of Medicine

6 Pacific Northwest 

Region: University 

of Washington

7 Pacific Southwest 

Region: University 

of California, 

Los Angeles

8 New England Region: 

University of 

Massachusetts
NIH MedlinePlus Fall 2006 27 
NIH Quickfinder & In Upcoming Issues Join the Friends of the National Library of Medicine

Institutes

n National Cancer Institute (NCI) www.cancer.gov 

1-800-4-CANCER (1-800-422-6237) 

n National Eye Institute (NEI) www.nei.nih.gov 

(301) 496-5248 

n National Heart, Lung, and Blood Institute (NHLBI)

www.nhlbi.nih.gov (301) 592-8573 

n National Human Genome Research Institute 

(NHGRI) www.genome.gov 

n National Institute on Aging (NIA)

www.nia.nih.gov

Aging information 1-800-222-2225

Alzheimer’s information 1-800-438-4380

n National Institute on Alcohol Abuse and 

Alcoholism (NIAAA) www.niaaa.nih.gov 

(301) 443-3860 

n National Institute of Allergy and Infectious 

Diseases (NIAID) www.niaid.nih.gov 

(301) 496-5717 

n National Institute of Arthritis and Musculoskeletal 

and Skin Diseases www.niams.nih.gov 

1-877-22NIAMS (1-877-226-4267)

n National Institute of Biological Imaging 

and Bioengineering (NIBIB)

www.nibib.nih.gov (301) 451-6772 

n National Institute of Child Health and Human 

Development (NICHD) www.nichd.nih.gov 

1-800-370-2943 

n National Institute on Deafness and Other 

Communication Disorders (NIDCD)

www.nidcd.nih.gov 1-800-241-1044 (voice) 

1-800-241-1055 (TTY) 

n National Institute of Dental and Craniofacial 

Research (NIDCR) www.nidcr.nih.gov 

n National Institute of Diabetes and Digestive and 

Kidney Diseases (NIDDK) www.niddk.nih.gov

Diabetes 1-800-860-8747

Digestive disorders 1-800-891-5389

Overweight and obesity 1-877-946-4627

Kidney and urologic diseases 1-800-891-5390

n National Institute on Drug Abuse (NIDA)

www.nida.nih.gov (301) 443-1124 

n National Institute of Environmental Health 

Sciences (NIEHS) www.niehs.nih.gov 

(919) 541-3345 

n National Institute of General Medical Sciences 

(NIGMS) www.nigms.nih.gov 

(301) 496-7301 

n National Institute of Mental Health (NIMH)

www.nimh.nih.gov niminfo@nih.gov

1-866-615-6464 

n National Institute of Neurological Disorders 

and Stroke (NINDS) www.ninds.nih.gov 

braininfo@ninds.nih.gov 1-800-352-9424 

n National Institute of Nursing Research (NINR)

www.nih.gov/ninr/ (301) 496-0207 

Centers & Offices

n National Library of Medicine (NLM)

www.nlm.nih.gov 1-888 FIND NLM 

n Center for Information Technology (CIT)

www.cit.nih.gov (301) 594-6248 

n Center for Scientific Review (CSR)

www.csr.nih.gov (301) 435-1115 

n Fogarty International Center (FIC)

www.fic.nih.gov 

n National Center for Complementary 

and Alternative Medicine (NCCAM)

www.nccam.nih.gov 1-888-644-6226 

n National Center on Minority Health and Health 

Disparities (NCMHD) www.ncmhd.nih.gov 

(301)402-1366 

n National Center for Research Resources (NCRR)

www.ncrr.nih.gov (301) 435-0888 

n Warren G. Magnuson Clinical Center (CC)

www.cc.nih.gov 

n Office of Research on Women’s Health (ORWH)

http://orwh.od.nih.gov (301) 402-1770

NIH Quickfinder

For more information or to contact any of the following NIH institutes, centers 

and offices directly, please call or go online as noted below:

I n u p c o m i n g

ISSUES

28 Fall 2006 NIH MedlinePlus

NIH MedlinePlus magazine 

will cover the topics and 

questions that Americans are 

telling us they want to find 

out more about, including:

n Women and Heart Disease—

The latest research findings

nNew Hope for Back Pain

n Updated Guidelines 

for Asthma Treatment

n Hidden Health Dangers 

of Acid Reflux

nTalking About Depression

nTreatment for Sleep Disorders

nWarning Signs of Stroke

n On the Frontiers 

of Genetic Research

nand much more
It’s like

drowning on 

dry land.

If you cough a lot, wheeze, 

are short of breath or 

feel tightness in your chest, you 

might have asthma. If you do, you 

need treatment to control it. 

Find out for sure.

Breathe easier.

Ask your doctor if

it’s asthma.

National Asthma Education and Prevention Program

National Heart, Lung, and Blood Institute; National Institutes of Health; Public Health Service; 

U.S. Department of Health and Human Services

www.nhlbi.nih.gov

Coughing Wheezing Shortness of Breath

Tightness in Chest
National Library of Medicine, National Institutes of Health

D o c t o r M om:

A little something for your 

home practice.

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