Sunday, January 15, 2012

Crappy Genes

I have a twin sister. We're not identical. She was diagnosed with Type I diabetes, about 2 years ago.

My older sister just found out that she is insulin resistant, which explains some of her extreme reactions she has to sweets. My mother was also told she was mildly insulin resistant, and was heading towards Type II diabetes, which is different than Type I diabetes, but in the end means that my mother and my twin sister often order the same kind of food at a restaurant.

Of course, my mother gets to eat the food without the silly nuisance of an insulin injection, unlike my sister, who pretty much has to shoot up every time she puts anything in her mouth that isn't an egg.

And please, before you ask, let me just say, no, my twin sister is not fat (5'7" and pushing 100 pounds soaking wet), she didn't get the disease from drinking too much Diet Coke, and no, diabetes is not like AIDS. (These are real questions. Not even joking. People are seriously dumb.)

I come from a family of 8. 6 kids. When I was diagnosed, every female in my family immediately got tested. Every male in my family refrained, including my father. My mother pushed my father to get a kidney ultrasound at his conveniently scheduled yearly physical, and it was then that we found out that I got my disease from him.

My brothers haven't been tested for PKD. Part of it is that they are worried that they would lose their health insurance if a pre-existing condition is discovered. I don't know how that all shakes out now with Obamacare and everything. Maybe that's not an issue anymore. But the rest of it, I think they just don't want to know. Even when I tell them that any of my father's children have a 50% chance of having PKD, and the fact that my 2 sisters don't have it considerably ups the odds for them.

Plus, it's not exactly a cheerful conversation. I mean, how do you bring it up--"Hey, don't you want to know if you're going to DIE??" My family would much rather talk about politics and religion than kidneys. (Although you'd think politics and religion wouldn't be cheerful conversations either, which is sometimes true, but at least in my family, the conversations are never boring. Unless my husband is talking about contract law.)

But regardless of the stimulating conversations, between the kidneys and the pancreases (pancreai?) it seems my family didn't exactly win the gene lottery, did we.

Still, I suppose it's not all bad. I did inherit long legs and a musical ear. My husband tells me those count for something. Especially the long legs.


Anonymous said...

"Even when I tell them that any of my father's children have a 50% chance of having PKD, and the fact that my 2 sisters don't have it considerably ups the odds for them."

Good news for your brothers, it doesn't change their odds of having PKD (which are 50%) because your sisters do not have PKD!

Think of it like this, if you flip a coin you have a 50/50 chance of getting heads, right? If you get heads, does that increase your chance of getting tails the next time? No! You are not guaranteed a tails after a heads, you have a 50/50 chance of getting heads, or tails, again. Even if you flip 100 heads in a row, the odds of flipping a 101 head is 50%. This is because the coin doesn't remember that it flipped a heads the last time.

Sperm are the same way! The sperm that formed one of your siblings didn't know what genetic code was, or was not, shared with the previous siblings.

But, it's logical to say, 50% odds with 6 kids means 3 of the should have PKD. Statistically yes, but only for a very large population. Take another 50% odds: having a boy or girl... we all know families that have 75% or 100% boys (or girls) against all odds. Yet over all of Earths population we have 50% men and 50% women at birth.

It's possible, that none of your other siblings have PKD. Not probable, but possible. I hope this comforts you, and them. (And by "you" I mean the empathetic part of you, because if it were me the vast majority of me would be pissed at probability!).

Heather O. said...

Anon, thanks for the probability lesson. There's a reason I got a D in high school math :).

Chump2 said...


I've been watching your blog passively over the last two years or so. Figured I'd reach out and comment on this post since we share a few things in common -- I have PKD and my wife has Type 1 Diabetes.

Anyway, I'd say your brothers are pretty smart for not seeking out a diagnosis for the "insurance risk" especially if they have families of their own. I am 31 and I pay as much for a $200k term policy as my brother in law pays for $1M. The system sucks but, we can't do anything about it.

As for Type I, has your sister looked into an insulin pump? My wife was diagnosed in 2009 and started using a pump soon after. You eat, you bolus, and you correct.

Otherwise, thanks for starting this blog -- it's cool to see people speaking out about PKD.

Rob Monroe said...

"Especially the long legs" FUNNY!

After I was diagnosed my mom was diagnosed with MS. My sister has Celiac disease, among other long-term ailments. My brother and father are in the same "don't go to the doctor" plan, which is really annoying.

My understanding is that if they are diagnosed now it is not a pre-existing condition because they did not know about it. I think that the new health care law would have more leniency on pre-existing conditions, and that is part of why I think it is so important.

The Wiz said...

As the sister in question, I would like to clarify that it's been 3 years since diagnosis. No I do not have a pump. I am fine with the shots, but I am not turning down the possibility of a pump in the future.

I do, however, have a cool new CGM (continuous glucose monitor) which is very cool, and I love it muchly.

Heather O. said...

Chump2, thanks for your comment. I'm amazed you were able to get any life insurance at all. We were in the middle of the process of getting life insurance when I was diagnosed (for both me and my husband) and I was turned down by 4 providers. My agent called and said that he could keep trying, but that we'd have to probably pay double or triple premiums to get me insured. We declined. So in terms of life insurance, I feel your pain.