Steve Cameron: Readers' reaction spans the spectrum

Aweek ago in this space, I wrote about my sister's 35-year struggle against the demons of diabetes.

There has been a fairly remarkable response from readers -- and others to whom the column was forwarded, or who saw it on various Web sites, from the Sun-Star's to others that popped up on Google searches.

The messages I've received cover the whole spectrum -- from diabetes sufferers thanking me for bringing a disease often taken for granted by the general public into focus to, well...

To others who hammered me for making Type 1 diabetes sound too scary, for "generalizing" about the disease and thus frightening people who might be newly diagnosed -- and amazingly, from some Type 1 sufferers who claimed to have very few complications and basically suggested that my sister either was not following the proper protocols or perhaps was the victim of bad medical advice.

Before I get to the two critical points I wish to make here, let me straighten out any misconceptions about my sister's duel with diabetes.

First, my sister Kris has been as conscientious as it's possible to be while dealing with Type 1 diabetes. I would invite anyone who suggests otherwise to stop around, and watch the 12 to 16 daily blood sugar tests, or the ongoing glycosylated hemoglobin tests (hA1C) which last about three months each in her case, and are done several times per year.

Yes, that's pretty much non-stop.

Her blood sugar levels, despite the move to an insulin pump and rigorous monitoring of food intake, are what a lot of diabetics and the medical people who treat them call "brittle."

In other words, sometimes there's just no control no matter WHAT she does.

Thus she's been hospitalized -- lapsing toward a coma -- many, many times with sudden and terrifying reactions, both from high AND low blood sugar.

To use her own words: "It can be something as simple as an injection that hits fatty tissue one time and not another. So the same amount of insulin -- exactly what your level suggests -- can have different reactions for the tiniest reasons."

As for her care, she has been blessed with some amazing doctors -- one of whom was a consulting researcher at the University of California Medical Center and another who is currently part of an elite diabetes research team at Stanford.

Kris and the doctors have done everything, and to those who would question it, she says: "For all the problems, I made it past 30 years from diagnosis until my kidneys failed. That's actually a good result."

That statement is why I said, in the original column, that if someone with Type 1 diabetes lives long enough, the battles become more difficult and dangerous. The disease, no matter how well you care for yourself, WILL take a toll.

Can relentless adherence to diet, testing and other things delay or lessen the damage?

Yes, of course.

But there are NO guarantees.

Now to the two key points I wish to make as a follow-up to the original column.

First, I wanted to shout out to the general public that diabetes is NOT just something simple, a condition that can be controlled with diet and injections alone.

Most people, for instance, don't even know the difference between Type 1 and Type 2 diabetes.

Type 2 can be controlled -- even prevented in some cases -- with proper diet, avoiding obesity, pills and other methods.

On the other hand, Type 1 -- an autoimmune disease -- is a miserable beast that will fight you most of your life, as I've sadly seen up close.

I received a critical e-mail from someone who pointed out that U.S. Supreme Court Justice Sonya Sotomayor has had Type 1 since childhood, yet lives a normal life "with no complications."

With all due respect, no one with Type 1 is living what an average citizen considers a normal life. Most people aren't monitoring their blood sugar and juggling insulin injections night and day.

And the idea of no complications...

"Remember that in addition to everything else, even someone doing fairly well with Type 1 is always in danger from other illnesses," my sister points out. "If I catch pneumonia, that's a completely different problem than someone without diabetes would face."

Roll all that together and you see why I pointed out originally that this is a lifelong battle, and it's never won.

Do some Type 1 diabetics live long, productive and fulfilling lives?

Absolutely, but it's an insult to them and others who aren't so lucky to call it "normal."

Finally, my second point...

I was accused of scaring people -- one man wrote that I might terrify the parents of a 6-year-old who had just been diagnosed with Type 1.

Perhaps, but I don't believe that's a bad thing.

The child isn't going to read my column. And for the parents who do, my message is that it's good to be a little scared.

It reinforces the urgency of getting the best possible care -- as early as possible -- and following solid medical advice religiously.

Remember, some of these people I might "scare" perhaps always thought diabetes was something routine.

The sooner they understand that the common public perception is NOT reality, the better their child or loved one will be in the long fight ahead.

Finally, for everyone who took time to wish my sister and my family well...

Thank you and God bless -- from all of us.

Steve Cameron is a columnist for the Sun-Star. He can be reached at stevecameron1000@gmail.com.