#trialnet

This is my baby. She's my whole world. Today we found out that she has 4/5 autoantibodies for type 1 diabetes. This basically means that it's just a matter of time before she's diagnosed. My entire world has just collapsed. I can't bear this... #t1 #trialnet #fuckdiabetes #myminime #myheart (at Weemacs HQ)

My daughter, Vivienne, asked my wife and I this morning if today's blood test would be the last. Later as the nurses prepared to insert a needle in her arm she cried "why me??!". I didn't know what to say to her. I just told her I loved her. Vivienne is not type 1 diabetic, I am, and I have been for over 30 years. Because type 1 can run in the family our children were tested for the autoantibodies that indicate if they are at risk. Vivienne tested positive for 2 of the 5. These 2 particular autoantibodies indicate she has a 50% chance of onset of type 1 in her lifetime. She may or may not ever develop type 1 diabetes. But because of her Hashimotos diagnosis her risk is higher. The boys have tested negative but they will be tested annually for life. The autoantibodies are like light switches and can turn "on" at any time. Trialnet is a clinical trial that tests eligible individuals who are family (children, parents, cousins, siblings, nieces and nephews) of a type 1 diabetic. Vivienne qualified for the Oral Insulin study and we chose for her to be a participant. This allows the study to follow her closely during her life and keeps us updated on her autoantibody status. She also takes a daily capsule that contains either placebo or oral insulin. We will find out eventually when the study closes. My bet is that she is getting the real insulin. Most parents of children who develop type 1 learn either after onset or when it's too late and medical emergency lands them in the hospital. With Trialnet the bloodwork can tell us it's going to happen before she even has any symptoms. We hope she never develops it. In the meantime, as participants we also are part of the team that's looking to understand type 1 diabetes, learn how to prevent it and possibly finding a cure. One day these blood tests will be part of a child's routine physical exam. In fact they are available at Quest diagnostics but a lot of insurance companies deny covering them. Which is why Trialnet is available to families free of charge all over the world. It makes me sad that people who are eligible to be tested refuse, even in our own family. I don't understand. But I have hope that someday we will have a cure. For now we press on and do what we can to keep our kids safe and healthy. Www.diabetestrialnet.org