Lately I have had a lot of newly diagnosed type 1 diabetics and parents of newly diagnosed children contacting me. I have met many of them at diabetes events and have also been contacted via email. I often forget how hard it was in those first few years because I was younger and not to concerned about my disease. As I have gotten older and have gotten control of my diabetes I can't imagine the difficulties of raising a child under 7 with diabetes. It can clearly be done but it takes a tremendous amount of work and is very stressful. When the parent of a newly diagnosed child approaches me I always try to keep the conversation upbeat, the last thing someone needs to hear is the negative side of diabetes.
It bothers me that in this day and age that parents are given books about diabetes, the books are great but do not cover the fears and questions that many patients have. For example I remember my parents being terrified when I was diagnosed because they didn't know how I could play baseball with diabetes. Each parent or patient has different concerns and different questions, we have amazing websites, blogs, and forums that answer questions but I believe we should have more. I would love to get a list of people in Rhode Island that live with diabetes and do so successfully. The one requirement of being on this list would be the ability to answer an email within twenty-four hours. Each person on this list would be listed under their specific diabetes trait. For example, a 19 year old child that runs track in college, he could look at this list and under athletics see my information. All that would be listed is my name, email address, a short bio explaining my expertise in the area and my diabetes history.
The one problem with this idea is HIPPA, everyone that would be on the list would have to sign a contract saying that they agree to make their diabetes information public. After that the program would have to work with the hospitals to get this list handed out to every newly diagnosed patient. I don't believe that this idea is impossible but like anything it would take a bit of work. I ask anyone that is in the state of Rhode Island living with diabetes and is interested in joining the list to contact me. The easiest way to contact me would be by going to this page. I look forward to hearing from people and hope to make progress with this idea.
It bothers me that in this day and age that parents are given books about diabetes, the books are great but do not cover the fears and questions that many patients have. For example I remember my parents being terrified when I was diagnosed because they didn't know how I could play baseball with diabetes. Each parent or patient has different concerns and different questions, we have amazing websites, blogs, and forums that answer questions but I believe we should have more. I would love to get a list of people in Rhode Island that live with diabetes and do so successfully. The one requirement of being on this list would be the ability to answer an email within twenty-four hours. Each person on this list would be listed under their specific diabetes trait. For example, a 19 year old child that runs track in college, he could look at this list and under athletics see my information. All that would be listed is my name, email address, a short bio explaining my expertise in the area and my diabetes history.
The one problem with this idea is HIPPA, everyone that would be on the list would have to sign a contract saying that they agree to make their diabetes information public. After that the program would have to work with the hospitals to get this list handed out to every newly diagnosed patient. I don't believe that this idea is impossible but like anything it would take a bit of work. I ask anyone that is in the state of Rhode Island living with diabetes and is interested in joining the list to contact me. The easiest way to contact me would be by going to this page. I look forward to hearing from people and hope to make progress with this idea.
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