Like many other parents with a Type 1 child, the fear that my other children will become diabetic haunts me. My husband and I have tested both of my other two sons with their brother’s blood glucose monitor when either have shown the remotest symptom of Type 1, like downing more than one glass of juice in a single sitting, or using the restroom one too many times during a long-distance road trip.
My oldest son, who is Type 1, has been gleeful when we’ve tested his brothers. He’s been assigned to the task of doing the actual lancing, which he’s welcomed with great relish. To be sure, I’ve double checked the setting on the lancet to ensure that it’s not set at “5.”
Thankfully, we’ve had only normal readings from this impromptu testing for them thus far, but to be sure, I’ve turned to the Internet and surfed around various sites as well as checked other printed resources looking to see what the likelihood is of my other two sons having diabetes. The reports are conflicting, ranging from one of 1 in 10 before reaching the age of 50%20to%20two%20to%20six%20percent%20(http://www.dlife.com/dLife/do/ShowContent/type-1/diabetes-causes) to two to six percent. The statistics are different if a child’s other immediate family members have Type 1; for example, a Type 1 father has a 1 in 17 chance to have a child that gets diabetes. These stats vary depending on which of the child’s relatives is Type 1.
I’ve read recently about many of the amazing advances in diabetes research that have occurred, particularly for the very recently diagnosed. The more I read, the more I know that my sons would benefit from knowing if they’ve a predisposition for getting Type 1.
This past summer, it was recommended to me that I look into the TrialNet studies and to get my sons in for testing. TrialNet is conducting two types of studies: one to screen for individuals who may be at risk of getting Type 1 Diabetes, which is called the Natural History Study; the second examines the potential of someone who is a newly diagnosed Type 1 to preserve the insulin producing cells.
The Natural History Study, being conducted to observe how the disease develops, is screening for those who are at risk of developing Type 1 diabetes. This risk can be assessed by determining if someone has autoantibodies in their blood. Autoantibodies are proteins found in the blood and indicate if the beta cells (or insulin producing cells) in the pancreas have been damaged and can appear in the blood several years before someone develops Type 1. If a screened individual is identified as being at risk of developing Type 1, then he is monitored closely and then could be offered the chance to participate in the intervention studies.
Screening is done by a blood test, with blood being drawn via the arm. The blood sample looks for the autoantibodies. Results of the screening are available in four to six weeks. If the results are negative, they are sent by mail. It is recommended that those that are under 18 years of age be retested in a year. Too, TrialNet makes clear that if results come back negative, it is not a guarantee that one will not get Type 1, but that one has a lower risk of contracting the disease.
If the screening comes back positive for autoantibodies, then a TrialNet representative will contact the participant (or parent) by phone. The screening then is repeated to confirm the results. Those with confirmed results of autoantibodies are invited to participate in a risk assessment that will determine the participant’s likelihood of developing diabetes in the next five years. Participants are monitored, which includes visits every six months for additional testing to determining the likelihood of developing Type 1.
TrialNet currently is screening the following people, at no charge, to determine their risk:
- Those between the ages of 1 and 45 years of age who have a sibling, child, or parent with Type 1 Diabetes.
- Those between 1 and 20 years of age who have a cousin, aunt, uncle, niece, nephew, half sibling or grandparent with Type 1.
There are over 200 locations around the world that offer both the screening and the clinical studies. Click here for a list of regional centers to contact for a location near you.
TrialNet was created by Congress as an international network to develop a plan for diabetes research. It is jointly funded by the following groups: The National Institute of Diabetes and Digestive and Kidney Diseases (NIKKD), the National Institute of Allergy and Infectious Diseases (NIAID), the National Institute of Child Health and Human Development; The National Center of Research Resources at the NIH, Juvenile Diabetes Research Foundation (JDRF), and American Diabetes Association (ADA).
Although I’ve been aware of TrialNet and the risk assessment testing it offers for nearly eight months, I’ve only just made the appointment to have my children tested. From a realistic standpoint, I understand fully the benefit of knowing if my child has the genetic markers for Type 1.
Yet something has held me back. This past August, I even went as far as to call the local TrialNet representative, who spent time walking through the process with me. Still,I hesitated. The possibility finding out that one – or both or of my boys – have markers indicating the potential of developing Type 1 paralyzed me; I was reluctant to give up the false pretense that they will never get Type 1 because their brother already has it, and we therefore should be absolved.
As I mentioned above, after reading more about research being conducted on the very recently diagnosed and the benefits they can reap, I finally picked up the phone last week to make the appointment for screening for both of my sons and myself. Our appointments are in early March, and I admit I harbor some trepidation. If I can move past that, then my biggest challenge will be convincing my seven-year-old the drawing the blood for the trial will be painless. Of course, it doesn’t help that his brothers have told him that the needle they will draw the blood with is over two feet long.
So much for brotherly love.