SHAPLEIGH – At the age of 10, Caroline Jacobs of Shapleigh wasgiven a diagnosis that changed the course of her young life.Doctors determined that she had Type 1 diabetes, which means shemust rely on insulin injections in order to stay alive.
In addition, Jacobs has two other auto-immune diseases. the firstis vitiligo, a disorder where white patches of skin appear ondifferent parts of the body. this happens because the cells thatmake pigment in the skin are destroyed. in addition, vitiligo canalso affect tissue inside the mouth, nose and eye, according to theNational 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’simmune system mistakenly attacks the thyroid gland, which cangreatly increase the body’s metabolic rate and also affect moodsand even physical appearance, according to the Mayo Clinic.
All this hasn’t kept Jacobs down, though. Now 14 and a freshman atBerwick Academy, she’s headed to Washington, D.C., next month totake part in the Children’s Congress, which is held every two yearsby the Juvenile Diabetes Research Foundation International. Jacobsis one of 150 children suffering from Type 1 diabetes chosen forthe congress, which will include delegates from all 50 states, aswell as countries such as Australia, Denmark, Israel and Mexico.the goal behind the Children’s Congress, a three-day event, is tourge U.S. leaders to support funding toward finding bettertreatments and ultimately a cure for Type 1 diabetes.
Well-known actress Mary Tyler Moore, who has struggled with Type 1diabetes for the past 40 years, will lead the congress, which hasthe theme, “Promise to Remember me.”
Jacobs spoke with the Reporter this week about what led to herdiabetes diagnosis and her hopes for the Children’s Congress, aswell as the future.
Q: how old were you when you found out you haddiabetes?
A: I was diagnosed with Type 1 diabetes when I was 10 years old. Iwas being checked for another auto-immune disease – vitiligo – andthey ran a blood test that showed elevated sugars. I was then sentto have a glucose tolerance test. I was asked to drink a very sweetdrink and I was sick within minutes. My blood sugar skyrocketed andit was clear I had Type 1 diabetes. It’s funny that my mom (GraceJacobs) did not know before that, because I had not been eatinganything that hurt my stomach for nearly a year. Now, when I thinkback, I realize I was pretty sick.
Q: what were your symptoms?
A: for the year prior to the diagnosis I was getting weaker all thetime. I loved playing on the Massabesic United travel soccer team,but I was no longer able to run fast. I felt sick every time Iplayed. I was actually really sick, but we just didn’t know it. Iwas also tired a lot and I could not eat anything sweet withoutfeeling horrible. I was very thin and small and I was alwaysthirsty.
Q: what is your treatment and do you requireinsulin?
A: I was admitted to Maine Medical Center on July 20, 2007, and wasimmediately surrounded by a dietitian, diabetes educator and anendocrinologist. I was taught how to check my blood sugars with ameter and my parents learned how to calculate the amount of insulinI needed based on the blood sugar results. We all learned how tocount carbohydrates and to calculate the amount of insulin I neededbased on how many carbohydrates I ate. I was giving myself aboutseven shots of insulin a day by the time I left the hospital. Whenyou have Type 1 diabetes your life depends on insulin. I will needinsulin for the rest of my life unless there is a cure. I now havean insulin pump that calculates the insulin dose based on my bloodsugar level and how many carbohydrates I am eating and myactivity. It is a miracle, but it’s still difficult to manage attimes. The pump needs to be attached to me 24/7, but it’s betterthan all those shots. I now only have to change the infusion setevery three days.
Q: what types of activities are you involved in atschool?
A: At school, I play soccer and lacrosse and I am in thechorus.
Q: how did you get chosen for the Children’sCongress?
A: I was chosen for the Children’s Congress through an applicationprocess. I sent in my application and waited five months before Iheard back. I was really excited to be chosen to represent Maine. There were 1,200 applicants and only 150 were selected. Part ofthe reason I was chosen is due to the amount of fundraising andadvocacy I have done. I have been very involved in the annual Walkfor a Cure in Portland and other events to raise money for diabetesresearch.
Q: how long will you be in D.C.?
A: I will be involved with Children’s Congress for three days. Wewill have meetings, training sessions and speak with Mary TylerMoore and other delegates at a Senate hearing to appeal to Congressfor continued research support. We will also sing with “AmericanIdol” finalist Crystal Bowersox, who also suffers from Type 1diabetes.
Q: have you been there before and will there be time forsightseeing?
A: I have been to D.C. twice before, but it’s going to be differenttraveling with diabetes because all the supplies and the pump makeairport security a bit more challenging. my mom and I will stay fortwo more days after the Children’s Congress and we hope to visitthe National Zoo, the Smithsonian and some of the memorials.
Q: what are your hopes and goals for thecongress?
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 ofothers with Type 1 diabetes and eventually eliminate the diseaseonce and for all. We cannot fall behind in funding research forbetter treatments like the artificial pancreas. People with Type 1diabetes desperately need better tools to manage the disease andprevent life-threatening complications. I want to ask (our leaders)to keep supporting research so someday I am free of the dailyburden of this disease. I want to see a cure in my lifetime.
Q: what would you tell people about Type 1 diabetes thatmaybe they don’t know?
A: I wish people understood that Type 1 diabetes is a lot differentfrom Type 2 diabetes. Type 1 diabetes is an auto-immune disease. Idid not do anything to cause it. With Type 1 diabetes my pancreasdoesn’t work anymore. I do not make insulin so I have to injectit. Type 2 diabetics still have a working pancreas, but it’sforgotten how to use the insulin. This means they can often adjusttheir diet and exercise and take oral medications to manage theirdisease. that doesn’t work with Type 1. I was always active and ahealthy eater. my body attacked my pancreas and changed the wholecourse of my life. I will need to take insulin every day of my lifeand I am never free of the worry.
I dream of living like other teens who don’t have to worry abouttheir blood sugar counts and the complications every single minuteof every day like I do.
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