Nicole Johnson, Miss America 1999 and an
international spokeswoman for diabetes
issues for the past five years, introduces her
Web site as follows:
“Thank you for visiting my Web site.
“The last several years of my life have been dedicated
to the fight against diabetes. My hope is that
this Web site will serve as an educational resource for
you and will inspire you to join this cause.
“The goal of my fight against diabetes is both to
find a cure and to inform patients of opportunities for
better care and treatment. There are so many ways
you can get involved in programs—from ‘Advocacy’
through ‘Take the Lead’ to volunteering with one of
the diabetes organizations to financial support. We
need your help. Again, thank you for visiting and
keep fighting diabetes.”
Over the past eight years, Nicole has worked tirelessly
promoting awareness, prevention and early
detection of the “hidden killer,” diabetes. She has not
been limited to public speaking; she publishes regularly
and volunteers much of her time in Washington,
D.C. lobbying the U.S. Congress on behalf of diabetes
issues. In addition, she also works with state legislatures
to improve insurance coverage and general
health care for the millions of individuals with
diabetes.
Another of Nicole’s passions is diabetes research.
Over the last several years she has helped generate
more than $16 million for this cause.
Beyond these activities and achievements, Nicole
has written her autobiography, Living With Diabetes,
and collaborated on two cookbooks. The autobiography
details Nicole’s journey through life with diabetes,
her achievement of Miss America and the tests
that have been placed on her faith and foundation
along the way.
TH: Nicole, welcome to totalhealth. Your being a
former Miss America, I would appreciate your
thoughts regarding the possibility of eliminating the
talent, along with any mention of platform issues,
from this year’s Miss America telecast.
NJ: The TV network and producers of the show are
trying too hard to make it hip and modern. They
aren’t looking at the beauty of the old fashioned talent
aspect—still have talent but only the top five—not
necessarily the women who might win Miss America,
really sad. It has been two and a half months since the
information leaked out so who knows what will
happen.
I was enraged because during that time period I
was diagnosed with diabetes and had enough fire and vigor to become involved with the Miss
America program so I could talk about a cause.
TH: Yes, and I guess we don’t need role models
any more do we?
NJ: That’s the darndest thing about it, but
that’s how it sounds doesn’t it?
TH: I was under the impression that type I diabetes
was a childhood onset disease.
NJ: I was diagnosed with type I diabetes at 19.
Type I has been commonly referred to as juvenile
diabetes. However we have begun to
change that terminology. Over the past decade
or so scientists have realized there are thousands
of people who were misdiagnosed.
When they came in at 35 or 40 with the symptoms
of diabetes, it was assumed to be type II.
They were then treated by putting them on
weight loss programs and prescribing oral
medications. However those individuals
moved rapidly to needing insulin. What we
began to realize was that certain people have a
genetic susceptibility or predisposition to type
I diabetes, that can be triggered by an environmental
factor at any point in life. As I mentioned,
I was first diagnosed at 19. It is also
important to understand that being diagnosed
doesn’t necessarily correlate with the onset of
the disease, which could have been active for
years prior to the diagnosis.
Over the past several years my younger
brother, who is now 28, and I have participated
in a research study. We both have the same
genetic predisposition for diabetes. However,
he has not contracted the disease. It is assumed
at some juncture I came in contact with a virus
that triggered my condition. However, it can’t
be proven as a fact. It may have been a virus I
encountered in college. Who knows. Maybe if
I had gotten more sleep or been healthier, it
could possibly have prevented the disease.
There is no way to know.
TH: Over the past decade America has seen an
alarming increase in type II diabetes in both
adults and children as well as deaths from diabetes.
Is this directly related to the endemic
obesity and sedentary lifestyles of our citizenry?
NJ: Typically yes. The way it is most easily
described is when an individual has type II diabetes,
his or her body produces the insulin
needed to counteract their glucose intake naturally.
An imbalance in diet or activity levels
can affect the body’s ability to metabolize
nutrients by using its own insulin to process
glucose effectively.
Oral medication can be prescribed to
reduce weight by 10, 20 or 30 pounds and
hopefully bring the process back into balance.
However, at some point in time, the body loses
it capability to utilize its own insulin and injections
or a pump become necessary.
TH: When an individual has a blood test
during a regular physical, are they tested for
diabetes?
NJ: They are supposed to be. However there
are many instances when people have checkups
and their blood glucose indicates they may
have diabetes but they are not diagnosed.
On average, over the 18 million people in
the U.S. who have diabetes, about 16 million
have type II. Most people with type II live with
the condition nine to 12 years before they are
even diagnosed.
TH:Wow. How many people would you estimate
are currently living with diabetes that
hasn’t been diagnosed?
NJ: Between six and nine million.
TH: Are these individuals at high risk for
serious health problems during this period of
time?
NJ: Absolutely. The way most of these individuals
are diagnosed is when they manifest one
of the secondary conditions which are brought
on as a result of the diabetes. For instance, a
heart attack or stroke, loss of feeling in the feet
or a blister on the foot that doesn’t heal over an
extended period to time. These problems are
often how an individual finds out they are diabetic.
Unfortunately this means either medical
professionals aren’t holding up their end of the
bargain in testing people and alerting them
about diabetes or our population just isn’t
taking the initiative to get regular checkups.
TH: Let’s go back to when you were 19 and
found out you had diabetes. Is that when you
began to pursue information about your own
condition? How might you help other individuals
gain an awareness of what needs to be
done to deal with their conditions.
NJ: Prior to that point in my life my goal was
to become a journalist. My intended career
path was oriented toward being a TV reporter
or a news anchor. I continued to pursue these
interests for a couple of years after being diagnosed.
However, when I was diagnosed, a
change began to slowly happen in my heart
and my mind. I was diagnosed during the
beginning of my second year of college. While
I was in the hospital, they told me I needed to
drop out of school, that I would never graduate
from college, and other absurd things. So
I followed the orders and dropped out of the
university and decided to stay home for a
couple of months and learn how to take care of
my condition. After a few weeks I couldn’t take
it any longer. I had to be active again. I
enrolled in nursing school. Well that lasted for
three months and then I returned to pursue
my English and journalism degree. But I was
so impacted by being diagnosed with a chronic
condition and learning about how to care for
myself and others that my outlook on life
changed.
By the time I wound up in the Miss
America competition, my number one goal
was to become a diabetes advocate and to help
rid society of discrimination as it relates to
people with medical conditions. My secondary
goal was to become a journalist so that I could
gain the visibility to be an effective advocate
for diabetes awareness. Little did I expect to be
named Miss America and then immediately be
thrust into this field I continue to pursue.
So the long and the short of it is that I truly
was changed as an individual by my diagnosis
and by my condition. Actually I often argue I
was changed for the better because of it. I feel
grateful for the blessing of living with a
chronic disease even though, gosh, I’d give
anything in the world to have it taken away.
But also I would not trade the experience for
anything because the education, the personal
growth and the character development have
been tremendous.
TH: I am sure it has also been a blessing to the
universe of individuals with who you share
your message in helping them understand
their condition, how to live with it and contribute
to the greater community in spite of it.
Please give me your definition of an advocate.
NJ: Anyone who has a voice or a pen. We are
all built to be an advocate for something and
it’s up to us to use the tools that God has given
us. Whether it is our voice or written words,
we all have a heart and a mind that can conceive
of ways to make a positive impact on
peoples lives. Whether it is advocating for the
government, a cause like the American
Diabetes Association or advocating every night
in behalf of my three step-children in helping
them learn to read or understand their math homework and helping them learn how to be
contributing members of society. So it's all in
your actions towards others. An advocate is
someone who makes the effort to take a positive
action.
TH: You work with children who have diabetes,
you have a newsletter, you have written
two cookbooks and an autobiography, you
have raised $16 million for diabetes research,
you have a terrific Web site (www.nicolejohnson.
com), you are a congressional advocate
and an active national voice for the
American Diabetes Association (ADA). It must
be quite a task to create a balance between the
demands of those activities and the responsibilities
of an active family life.
NJ: It is very challenging in terms of my profession.
I often describe what I do as a threelegged
stool. One leg is the journalism, the
love of communication that has been
ingrained in me for some time. Also the books
and the articles and the Web site that I work
on. The second leg of the stool relates to the
public speaking and the education that I do for
the kids, speaking to medical professionals and
lay persons who want to learn about diabetes
and caregivers who want to learn how to motivate
the person they are caring for. The third
leg is the government work. I do a good deal of
consulting for a number of health oriented
organizations, including the ADA. Also about
twice a month I drive to Washington, D.C. to
meet with various congressmen, senators and
administrative officials trying to emphasize to
them the importance of looking into various
medical programs, whether it is funding
research or education programs or helping to
end discrimination in the workplace.
You're right, it is very hard to balance and
delegate my time. But I have a great group of
people who help me keep things organized and
a wonderful supportive husband and three terrific
step-children. When my husband is done
with his day job, he joins in and loves to give
his input. Even the kids have gotten involved
in our fight against diabetes. It is a family
affair. So while there is not much separation
from my personal life and my professional life,
I am really excited about the way it seems to
work for all of us. After eight years of living by
myself with almost a total dedication to diabetes
awareness, learning how to close my
office and spend time with other important
people in my life has been a wonderfully
rewarding experience.
TH: With all the research currently underway,
do you see a cure for diabetes in the near
future?
NJ: I am very optimistic about the future and
enthusiastic about the research that is happening
now, but it is going to be many, many
years. Hopefully it will be in my lifetime. My
greatest hope is that my children's children
won't even know what diabetes is, that we will
have gotten rid of it. Will it happen? I'm not
sure. Possibly not, in terms of how our society
is functioning now. Our general approach to
nutrition and physical activity is just abysmal.
The place where we believe there may be a
cure for diabetes is in type I because that is
where we have this genetic situation which is
being researched currently. Unfortunately we
just don't know what is causing it in people's
bodies.
We probably won't find an overall cure for
it because if we continue to be a society that is
sedentary and continues to overeat, then we
are going to have type II diabetes. The most
sobering statistic I can give you is that right
now about 10 percent of our society is diabetic.
If we continue on the path we are following, in
five years that figure will grow to 12 percent
and continue to get larger and larger.
TH: What is on your personal horizon at this
point?
NJ: My goal in diabetes at this point in time is
trying to find creative and innovative ways to
help people live well. That is everything from
advocacy, which we talked about, to writing
books and articles. Also we just finished a pilot
for a television show which talks about healthy
living and healthy lifestyles, whether it is from
the kitchen or the gym or exercising while you
are watching TV. It is starting on a network station
here in Pittsburgh and hopefully will be
syndicated on the networks across the country.
It is exciting.
I am also the constant student. One of the
wonderful opportunities afforded by winning
Miss America was the scholarship money.
Now I am about to utilize the last portion of
the money I received to get a public health
degree, so that hopefully I can combine my
master's in journalism with a master's in
public health to broaden the vistas of how to
impact people's lives and effect positive
change.
TH: Nicole, thank you for your time. It has
been a pleasure to have the opportunity to give
totalhealth readers a chance to become
acquainted with you. We have included the
following information on your books for our
readers conveinence.
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