Wednesday, December 2, 2009

Trials and Tribulations

A few weeks ago, I had my daughter, Amanda, screened for Diabetes at the JDRF Walk to Cure event. I have her screened once a year and have since birth. I would rather be safe than sorry.

(Courtesy of JDRF Las Vegas)

TrialNet is a network of researchers who are trying to find ways to prevent, delay and reverse Type 1 Diabetes. They conduct clinical trials worldwide for newly diagnosed T1’s and relatives of T1’s. TrialNet states in their brochure that ‘relatives of people with Type 1 Diabetes have a 10 to15 times greater risk for developing the disease than people with no family history’. I beg to differ. My family had no history of diabetes…until now. Until me. Yay, me. The modern day Schleprock.

The guilt that my crappy antibodies have given me is overwhelming. It goes way past eating a cupcake or squeezing my toes into those heels. This guilt is different, this guilt isn’t about me. This guilt is about what I have done to others. This guilt feels like someone is continuously punching me in the baby maker and it steals my breath away. This guilt is the knowledge that I, now and forever, will be the responsible one for passing down crappy genes to future generations of my family. Fantastic.

Amanda was a champion as she sat there and let them take her blood. She always is. She has known for her entire life that this is a reality for her. That this is a reality for me. That this could possibly be a reality for our future family. So, she sucks it up and watches the needle go in. She always looks at me with misty eyes while this is happening as if she is looking for me to save her. I always whisper ‘It’s ok.’ wishing with my entire being that I could. It’s a very strange feeling to have your heart swell with immense love while simultaneously being punched in the gut. But, I put on a brave face for her because I am positive and I have hope. Mostly, because I REFUSE to let Diabetes have my family. I refuse and will fight until the day I die to ensure that they don’t. ::rawr:: Mama bear's getting feisty.

Anyway, this screening test will see if she has the antibodies that are associated with developing Diabetes. And, yes, I like Diabetes to be capitalized. Anyway, if her results come back negative, she is free & clear for another year. :::hoping frantically::: For 15 years, she has had negative results. The wait time from testing to results is rough but we always celebrate when we finally know. You get a letter if negative & a phone call if positive. The walk was almost a month ago so I’m thinking we’ll get a letter.

However, if the results are positive…an entire new list of worries begins. Phase 2 of the trial study. Phase 2 includes more testing and determines the risk of developing Diabetes over the next 5 years. Then Phase 3 is simply following up and monitoring because there is no longer a question of ‘if’, only a question of ‘when’. This stage is also where you may be asked to take part in clinical trials should any be available. I would have to think long and hard about allowing her to participate in a study. I know this is the way to a cure, a way to control Diabetes before it controls her, and a way for possible and hopeful prevention. Yet, it is still a clinical trial. Realistically, it is an experiment. There is nothing to base my decision on other than hope. But, chances are that I would have her participate, if she wanted to. Simply because the hope of a positive thing totally outweighs the fear of a negative thing.

I strongly urge Diabetic parents to have their children screened for the accursed antibodies. Although nothing in this testing is 100%. It's very possible that if you have the antibodies, there is a chance you may not get Diabetes. If you don’t, it doesn’t mean you never will get Diabetes. It’s not conclusive but the results will give you an opportunity to take a path that you may not have seen. Like I said, better safe than sorry.



  1. You are an AWEsome Mama Bear.
    Crossing fingers, toes, arms, legs....

    LOVE that last picture. Love. It.

  2. fwiw, I capitalize Diabetes in my posts too.