Saturday, March 12, 2011

What "Preventable" Means To Me

Among the many things people with type 1 diabetes and their families are often told that I consider to be out and out false is the claim that type 1 diabetes is not preventable.

Why?

Well, if they knew that diabetes was totally genetic, they could say that. If they knew that the risks of type 1 diabetes were... well, nonexistent, they could say that.

But type 1 diabetes is not wholly genetic- there are lots of people out there who have an identical twin with type 1 but are themselves unaffected.
And there are risk factors, and continuing studies looking at more risk factors.
Also, if the rate of type 1 diabetes is not stable (and it does not appear to be) that suggests a nongenetic cause. And yes, I am aware that genetic diseases' frequency can change over time- but not as rapidly as the incidence of type 1 diabetes appears to be changing.

So I think it would be a lot more honest for a doctor to say that although it may preventable, he doesn't know how. Although I think some of the theories on the topic are worth mentioning (on that topic: Don't move to Finland, and don't introduce non-breastmilk foods to your babies any earlier than you have to).

Anyways. One of the things I find interesting about the topic of disease development is how people (particularly parents but also others) get very emotionally invested in their theories and feel personally attacked by the idea that something they or their child had might have been preventable. I don't really understand why.

I mean, let's say that people with certain genes have a 1 in 100 chance of developing type 1 diabetes if they live in the Salt Lake City vs a 1 in 1000 chance of developing type 1 diabetes if they live in rural Siberia (this is actually not a totally ridiculous assumption but it is certainly not a fact, so please don't ask me for a study). That would mean that if you had those genes and you lived in Salt Lake City and developed type 1 diabetes, there would be a 90% chance your diabetes could have been prevented.
I would feel pretty justified, in this hypothetical case, in saying that your diabetes probably could have been prevented- but I would not blame you or your parents for not preventing it. Why?
First of all, it's not very likely that you or your parents knew that you were genetically at a higher risk for diabetes (where high risk means 1% odds or greater). So you didn't know. Fewer than 20% (probably a lot fewer) of people with type 1 diabetes knew that they have any genetic or family risk factors prior to diagnosis.
Second, moving to Siberia would be a pretty drastic step to take to prevent something that has only a 1% chance of happening if you don't move to Siberia. Would you move your family to rural Siberia if there was a 1 in 110 chance that moving to Siberia would prevent one particular disease in a family member who probably wouldn't get the disease anyways? Probably not, since moving to Siberia would in fact lower your entire family's risk of asthma and lung disease, and you haven't moved there yet.
Third, there is no known way to prevent 100% of cases of type 1 diabetes (although theoretically, genetic screening of couples or killing everybody at risk before they develop it would work- I don't think these are likely to happen). So even if you knew all about your risk, and you actually were offered a nice job in Siberia, I don't know that you wouldn't have been one of the 1 in 1000 in Siberia. There's a 10% chance that you would have been, in this hypothetical scenario.
Fourth, what's done is done. Prevention does not mean that it is at all possible to reverse type 1 diabetes.

Also, not covered in my above scenarios, it's quite possible that risks for type 1 diabetes were not ones you could have avoided- for instance, if a diabetogenic virus happened to trigger your diabetes.

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You may have noticed I went longer than usual between posts. My brother Globe has been in the hospital for ten days now. It's not diabetes. I am pretty stressed out. I might tell you all about it, if he gives me permission.

4 comments:

Wendy said...

I hope Globe is okay...I'm so sorry he's not well. Hope everything is getting better over there.

Most of the encounters I have had with people who believe my daughter's dx could have been preventable are accusatory -- I must have not breastfed (she nursed for 2 years), I must have fed her candy, I must not have allowed her sufficient exercise, I must have done something wrong during her pregnancy...etc...

Those are the comments that strike a chord with me.

Reyna said...

OH NO...on Globe Jonah. I had been thinking you had been absent for longer than usual.

On the topic...well, usually, as Wendy said...it seems somewhat accusatory when people AND the media state this. AND, as this point it is unknown how to prevent it so I am not so sure that it is false to say that it is "unpreventable at this time". I think it "stings" a bit when people throw around misinformation or partial truths. That is all.

htimm=) said...

I'm sorry to hear about Globe, I hope he is okay and getting better even as I type this.

I think your perspective is interesting. We parents, take our roll pretty seriously. When something goes wrong or not prefect, we feel guilt. For some reason there are judgmental people out there who, probably out of fear, like to accuse and blame. When we as parents have done the best we could with what we knew and then have to deal with T1D, not knowing why or where it came from, it does sting when people especially in the media come across as trying to tell us our best wasn't good enough.

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