Be Transparent
If you're like me then you are a problem solver by nature. Hear a problem, find the answer. But what do you do when you don’t know anything about the problem?
You find someone that does...
What if the person with answer doesn’t know that there is a problem... or even that they are potentially the one with the answer?
Well, you can show them...
Somewhere on this planet there is a person that holds the cure to Arden’s disease. Perhaps they are working on it right now or maybe they're in college working towards being a doctor. It’s even possible that they haven’t been born yet.
Consider this. The person that one day discovers the cure for type I diabetes may never see this site or know Arden’s name. But perhaps a friend of a friend of a friend sees the site or maybe your child giving themselves a bolus in a resturant. What if that's how they learn of type I, how they become interested in knowing more.
My plan for curing type I diabetes is simple. Since I’m not a doctor or a scientist, I can only use what I know to help find a cure. My tools are the internet and total transparency. I try to show others what Arden’s disease is really like, no matter how uncomfortable sharing our lives may be. I believe that it’s Arden’s best chance to one day have a normal, healthy life.
Starting today I’m adding another focus to my plan by encouraging others like me to be transparent. Transparency is the key, I’m convinced of that. Those afflicted with type I “look” fine to the casual observer so we can’t expect people to be moved to advocacy without assistance because most don’t know the facts. So we are going to educate them. Tell them about the seizures, about how you live in constant fear that your child is about have one. Tell them type I doesn’t stop because it’s their birthday, three a.m., because they want to take a ballet class or because you're exhausted. Tell them that every second that your child’s blood glucose is too high is a second stolen from the end of their life. Try to make them understand the incredible, unrelenting pressure that this disease has created for you and your family, twenty-four hours a day, everyday, for the rest of your lives. Don’t hide, test and give injections in public, let people see your insulin pump. Encourage them to ask questions, be transparent. It’s not complaining, it’s education. It’s problem solving.
I used the internet but there are many other ways to share. Please find that thing you know about and use it to educate others. Together we can find a cure.
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