SHAPLEIGH – At the age of 10, Caroline Jacobs of Shapleigh was
given a diagnosis that changed the course of her young life.
Doctors determined that she had Type 1 diabetes, which means she
must rely on insulin injections in order to stay alive.
In addition, Jacobs has two other auto-immune diseases. The first
is vitiligo, a disorder where white patches of skin appear on
different parts of the body. This happens because the cells that
make pigment in the skin are destroyed. In addition, vitiligo can
also affect tissue inside the mouth, nose and eye, according to the
National Institutes of Health.
The other auto-immune disease Jacobs suffers from is Graves’
disease. It’s a form of hyperthyroidism that occurs when the body’s
immune system mistakenly attacks the thyroid gland, which can
greatly increase the body’s metabolic rate and also affect moods
and even physical appearance, according to the Mayo Clinic.
All this hasn’t kept Jacobs down, though. Now 14 and a freshman at
Berwick Academy, she’s headed to Washington, D.C., next month to
take part in the Children’s Congress, which is held every two years
by the Juvenile Diabetes Research Foundation International. Jacobs
is one of 150 children suffering from Type 1 diabetes chosen for
the congress, which will include delegates from all 50 states, as
well as countries such as Australia, Denmark, Israel and Mexico.
The goal behind the Children’s Congress, a three-day event, is to
urge U.S. leaders to support funding toward finding better
treatments and ultimately a cure for Type 1 diabetes.
Well-known actress Mary Tyler Moore, who has struggled with Type 1
diabetes for the past 40 years, will lead the congress, which has
the theme, “Promise to Remember Me.”
Jacobs spoke with the Reporter this week about what led to her
diabetes diagnosis and her hopes for the Children’s Congress, as
well as the future.
Q: How old were you when you found out you had
diabetes?
A: I was diagnosed with Type 1 diabetes when I was 10 years old. I
was being checked for another auto-immune disease – vitiligo – and
they ran a blood test that showed elevated sugars. I was then sent
to have a glucose tolerance test. I was asked to drink a very sweet
drink and I was sick within minutes. My blood sugar skyrocketed and
it was clear I had Type 1 diabetes. It’s funny that my mom (Grace
Jacobs) did not know before that, because I had not been eating
anything that hurt my stomach for nearly a year. Now, when I think
back, I realize I was pretty sick.
Q: What were your symptoms?
A: For the year prior to the diagnosis I was getting weaker all the
time. I loved playing on the Massabesic United travel soccer team,
but I was no longer able to run fast. I felt sick every time I
played. I was actually really sick, but we just didn’t know it. I
was also tired a lot and I could not eat anything sweet without
feeling horrible. I was very thin and small and I was always
thirsty.
Q: What is your treatment and do you require
insulin?
A: I was admitted to Maine Medical Center on July 20, 2007, and was
immediately surrounded by a dietitian, diabetes educator and an
endocrinologist. I was taught how to check my blood sugars with a
meter and my parents learned how to calculate the amount of insulin
I needed based on the blood sugar results. We all learned how to
count carbohydrates and to calculate the amount of insulin I needed
based on how many carbohydrates I ate. I was giving myself about
seven shots of insulin a day by the time I left the hospital. When
you have Type 1 diabetes your life depends on insulin. I will need
insulin for the rest of my life unless there is a cure. I now have
an insulin pump that calculates the insulin dose based on my blood
sugar level and how many carbohydrates I am eating and my
activity. It is a miracle, but it’s still difficult to manage at
times. The pump needs to be attached to me 24/7, but it’s better
than all those shots. I now only have to change the infusion set
every three days.
Q: What types of activities are you involved in at
school?
A: At school, I play soccer and lacrosse and I am in the
chorus.
Q: How did you get chosen for the Children’s
Congress?
A: I was chosen for the Children’s Congress through an application
process. I sent in my application and waited five months before I
heard back. I was really excited to be chosen to represent Maine.
There were 1,200 applicants and only 150 were selected. Part of
the reason I was chosen is due to the amount of fundraising and
advocacy I have done. I have been very involved in the annual Walk
for a Cure in Portland and other events to raise money for diabetes
research.
Q: How long will you be in D.C.?
A: I will be involved with Children’s Congress for three days. We
will have meetings, training sessions and speak with Mary Tyler
Moore and other delegates at a Senate hearing to appeal to Congress
for continued research support. We will also sing with “American
Idol” finalist Crystal Bowersox, who also suffers from Type 1
diabetes.
Q: Have you been there before and will there be time for
sightseeing?
A: I have been to D.C. twice before, but it’s going to be different
traveling with diabetes because all the supplies and the pump make
airport security a bit more challenging. My mom and I will stay for
two more days after the Children’s Congress and we hope to visit
the National Zoo, the Smithsonian and some of the memorials.
Q: What are your hopes and goals for the
congress?
A: My hope for the Children’s Congress is to remind (our leaders)
that their actions can help to improve my life and the lives of
others with Type 1 diabetes and eventually eliminate the disease
once and for all. We cannot fall behind in funding research for
better treatments like the artificial pancreas. People with Type 1
diabetes desperately need better tools to manage the disease and
prevent life-threatening complications. I want to ask (our leaders)
to keep supporting research so someday I am free of the daily
burden of this disease. I want to see a cure in my lifetime.
Q: What would you tell people about Type 1 diabetes that
maybe they don’t know?
A: I wish people understood that Type 1 diabetes is a lot different
from Type 2 diabetes. Type 1 diabetes is an auto-immune disease. I
did not do anything to cause it. With Type 1 diabetes my pancreas
doesn’t work anymore. I do not make insulin so I have to inject
it. Type 2 diabetics still have a working pancreas, but it’s
forgotten how to use the insulin. This means they can often adjust
their diet and exercise and take oral medications to manage their
disease. That doesn’t work with Type 1. I was always active and a
healthy eater. My body attacked my pancreas and changed the whole
course of my life. I will need to take insulin every day of my life
and I am never free of the worry.
I dream of living like other teens who don’t have to worry about
their blood sugar counts and the complications every single minute
of every day like I do.
