What Paul Allen Should Remind Us Of

There's been a lot written online over the past few days about Paul Allen, who co-founded Microsoft and then went on to become a philanthropist and owner and funder of many other businesses. By all accounts, he was a good guy. He died on Monday.

More importantly for anyone reading this blog, he was a Non-Hodgkin's Lymphoma patient. The announcements about his death (and most of the stories about him since) say that he died "from complications of Non-Hodgkin's Lymphoma."

He had been diagnosed, and was successfully treated, for Hodgkin's Lymphoma many years ago, and then was diagnosed with NHL in 2009, and again had successful treatment. It was only recently that he announced that the NHL had come back.

It's very sad news, and I very rarely write about people dying. I'm not in denial about it. But I also think it's better to focus on what we can do when we're still alive.

But in this case, I'm less interested in Mr. Allen than in the way people are talking about him, especially about his disease.

First of all, let's get this out of the way -- the only mention I have seen about the specific subtype of NHL that he had is that he was diagnosed with Diffuse Large B cell Lymphoma in 2009. I'm not 100% sure that's correct, but it's what I've seen. The official announcement of his death only mentioned NHL, not a subtype.

And, of course, every one of the dozens of stories that report on it also have to go with the information they have received -- that it was Non-Hodgkin's Lymphoma.

To me, that's what makes a bad situation worse. At least for NHL patients.

When we do get the bad news that someone has died of a disease that is connected to us in some way, our ears perk up even more. Old feelings return. Any worries we might have tucked away come back.

And if we read articles about someone famous with NHL, we get distorted information.

Like this article from CBS News called "Paul Allen's Death Shines Light on Non-Hodgkin Lymphoma." We get to read statistics about how many people are diagnosed with NHL every year, and about famous people who died from it. And while the article does point out that there are lots of different types, some slow-growing and some fast-growing, we still get an survival rate that lumps them all together.

That article title is ironic. It doesn't shed much light at all, certainly not to NHL patients. And whatever light it does shed, it just creates a bunch of shadows that hide information that might actually be useful.

The fact is, there is no "Non-Hodgkin's Lymphoma." There's no single disease that is called that. there are at least 60 different subtypes, and they can be incredibly different from one another. There's not much light being shed.

Now, part of the issue is that the official announcements about Paul Allen's death mentioned NHL, but not DLBCL. His family may have had a very good reason for not getting into more detail about his disease. And I respect that. They have other things on their minds right now.

But the only thing, for me, that's getting some light shed on it is the fact that there is still a lot of work to do when it comes to awareness. Anyone reading this probably already knows their subtype, and is working to learn more about their disease. That's good.

Now do what you can to educate others. Especially other patients. It doesn't matter so much if the general public knows the difference between DLBCL and FL. But a newly-diagnosed patient needs to know. Someone affected by FL needs to know that a statistic in a news story doesn't necessarily apply to them in the way it applied to Paul Allen.

Do your part to shed some light. Help others truly understand your disease.

And more importantly, try not to panic when you read statistics. Remind yourself that other people are not you, and statistics don't represent you. Focus on what you can do today to live your life well, and then do it.