Can you get more rare than I-Don’t-Know?

Can you get more rare than I-Don’t-Know? February 28, 2015

Today is World Rare Disease Day. I’m not sure that that even applies to us.

If we go with the most popular theory of the moment, Acute Flaccid Myelitis, it absolutely does. It used to be thought of as a rare effect of  Enterovirus D68, but then the CDC realized that less than 20% of patients actually were testing positive for ED68, so either it was infecting people but not testing positive for itself, or it was something else. In the absence of more answers, the government invented a new name – AFM.

AFM is the working label we’re going with, but Ella isn’t included in the 107 official patients diagnosed with it. Her disease progression is slightly different from the recognized patients, and most importantly in the eyes of the CDC, her symptom began much too early in the year to be AFM.

Our doctor’s conversation with the CDC went something like this, “I have a patient with suspected AFM.”

“When did she get sick?”

“The end of March 2014.”

“It can’t be AFM. That didn’t show up until August/September.”

It’s a common story we’ve heard from other parents of “suspected” kids. They got sick before the government recognized that there was an mini-epidemic of children being paralyzed, therefore anyone before the date the bureaucrats woke up must have something else. I’m not sure that it makes a difference whether or not she’s included on that list, other than it would be nice to have a label.

For me. Not for her. She doesn’t care.

I would just like to know what we’re looking at and have a prognosis. For instance – of the 107 with AFM only one has made a full recovery. That’s a sobering thought, but it’s important to note that they also didn’t get worse. Not getting worse would be awesome to know. But we don’t know, because we’re officially in the I-Don’t-Know column.

I-Don’t-Know could be something completely new or something that’s been-seen-before-but-not-like-this. It means that we’re stuck without answers, which seems like a lonely place to be until you start meeting all the other I-Don’t-Knows out there in the world. There are a lot of them. More than I’d ever imagined possible. Families pouring time and money into a hole and hoping to get answers that might not ever come, and learning to be okay with that.

That’s why this Rare Disease Day I’m asking you to say a prayer for all of the families who are living with strange and unpronounceable names. Then please say a prayer for those who are sitting with a diagnosis of “Who Knows?” Please pray that they find someone who can give the unknown monster a name and perhaps have an idea of how to beat it.

My own “I-Don’t-Know” not worrying about the reasons why
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