Diseased.
February 27, 2008, 10:11 am
Filed under: daily | Tags: , ,

Genetically speaking, I’m a screw up. I have a bleeding disorder, called Von Willebrand’s Disease. It is a minor inconvenience more than anything. Essentially, I do not clot appropriately. I am a slow clotter. A retarded clotter. My blood just needs a little more time to get the hang of it. Clearly, it could not be that life-altering because I wasn’t diagnosed until I was 16. Of course, I was generally a sloth-like child, and preferred spending my time curled up in a corner reading than doing anything that would injure me, so that made it easy to miss. Officially, it is a genetic disease. I have one copy of the screwy gene, and since it is a dominant disorder, I have it. Oddly, neither of my parents have it. I am proof that genetic mistakes DO happen and they DO alter the genetic line. I have a 50% chance of passing it on to my children.

Bear has type 1 diabetes.  He has a 4-6% chance of passing it onto his children. Actually, type 2 diabetes has a higher genetic link than type 1. Part of this is because type 2 is part of an overall metabolic syndrome: obesity, sedentary lifestyle, heart disease, high blood pressure, high cholesterol, and type 2 diabetes tend to be very closely associated with each other. One is genetically predisposed to eating a certain way, retaining a certain amount of weight, not exercising enough, so it tends to appear in families. Of course, one can come from a family with this metabolic syndrome and work hard to avoid it. Bear’s family is wrought with the metabolic syndrome, but he will probably avoid it since he’s been working hard to manage his eating, exercise and health from an early age.

However, type 1 is not the same thing. It is not related to lifestyle. They don’t really know how it works, yet. It is probably an autoimmune disorder, where his body specifically decided to kill off his insulin producing cells. Unfortunately, the spectrum of autoimmune disorders (rheumatoid arthritis, Crohn’s, lupus, etc) are not really well-understood. What causes the body to decide to attack itself? Why does it attack what it attacks in a given patient? Until we understand those questions, we can only treat the symptoms of each separate disease. I predict that eventually, we’ll be treating them as the same disease with a spectrum of symptoms.

Bear is the only one in his very large family to ever develop type 1. Many people have type 2, but he is the only type 1. He was diagnosed right before he started kindergarten, and has been taking meticulous care of it ever since.  We both say that if the worst thing that happens to us is these diseases, we’re lucky people. My bleeding disorder just makes being female a little extra exciting, and could make childbirth more complicated. I’m also more likely to have problems from a moderate injury that normal bleeders would be ok. A severe injury will be a problem for anyone. I also can’t give blood, because really? What good would that do to the person I gave it to? No good, that’s what.  Bear was lucky enough to be born and develop diabetes right around the time that technology and understanding of the disease were exploding. He had high quality insulin, he’s been on an insulin pump (extremely fine control) for 8 years, and he is on drugs that protect his kidneys from potential high blood pressure that comes with the disease. He is in excellent health, especially considering that he has a serious disease. The slightest issue with his insulin, as I found out over Christmas break, can land him in the hospital, but those situations are few and far between.

These are the things that I tell myself, because when I really think about it, the fact that I am a Bleeder, and he is a diabetic, and we’re going to have babies… that really scares the everliving daylights out of me.  We have a 2-3% chance of having a child with both diseases. A bleeding diabetic, now wouldn’t that be fun? I am more accepting of having a Von Willebrand’s child, because I know how easy it is to deal with it. Of course, having children with a person like Bear means I will probably have active babies who do things like figure out how to open their cribs and fall head first out of them (his nephews), or want a cookie so bad that they rock their high chair across the kitchen floor and then tip it over and break both wrists (Bear).

Having a child with diabetes is scarier. Marrying a diabetic is terrifying. Especially when I talk to a good friend of mine and find out that her older sister, a type 1 diabetic, recently died of it. Granted, she did not take appropriate care of herself at all. She was also born about 15 years before Bear, and just missed the massive leaps in treatment quality. Regardless, to know she died of kidney failure in her 30’s, blind and wasted away, is terrifying.

But I know, that no matter what, it doesn’t matter what my children have. Every pregnancy has a 2% chance of having something, anything, wrong with it, from massive developmental defects that result in extremely early miscarriages, to Down syndrome to genetic diseases to congenital birth defects. That means that the 4-6% chance of having a child with diabetes is not that much higher than the risk everyone takes when they choose to have a baby.

When you hang your hat on a statistic, you better look at the statistic from both sides. We say we’re lucky, because we are. Even if many people would consider a bleeding disorder and diabetes in one couple the opposite of good luck. I might be scared, but I’m still lucky. That’s what I have to tell myself. Thinking anything else would just be too hard.