Thursday, January 9, 2014

what does it mean to be .1 in 100,000?

One of the absolute best things about Maddie being relatively healthy the last couple years is that I'm not constantly searching the internet, reading the latest on forums and picking apart medical journals.

In fact, Maddie has done so well in the last year or so that I hadn't even read the recently published articles specifically about IgA Nephropathy. (This from the woman that has read countless scholarly articles about pediatric kidney disease and has a spreadsheet with over a hundred entries on it filled with urinalysis results, lab reports and doctor visits!)

But this week, the National Kidney Foundation posted on their facebook page about the new blood pressure guidelines for people with kidney disease, so I decided to refresh my memory and read the article.. and that lead to their website... and that lead to a couple of new articles on kidney disease.

Interestingly, one of the articles I read is about updated care for patients with glomerulonephritis (IgAN is in this family.) If Maddie went to a nephrologist presenting symptoms today like she did back in 2007 (?) her treatment might have been drastically different and much more aggressive. Hopefully with the new treatment protocols, patients and families don't have "lost years" while they try to get a diagnosis and treatment! I consider 2007 and 2008 (I think those are the years!) l"ost years" as all we did was survive and live in doctor's offices!

Reading these articles that have come out in the last year or so gives me great hope future generations of children with glomerulonephristis as more and more research is being done. It's interesting to read these studies where the pool of patients is 20 to 100 IgAN patients (and that's considered a strong, well funded and supported study!) I am reminded that while IgAN is the "most common form of primary glumerolnephritis" with up to 30% of all glomerulonephritis patients being diagnosed with IgAN it still a tiny percentage of people.  Take a look at this table below...

That's upto 30% of 7.6%.... What does that mean in numbers? Well, a recent article states that adults with IgAN are 2.5/100,000 people. Children with IgAN are .1/100,000.

Yeah. Not many people. No wonder there isn't much research!

These days I'm not worrying about research and prognosis so much. You get to a point in life that you have to say, I can't worry about that! We don't know how long Maddie will stay in remission. We don't know if it will progress to end-stage renal disease. Thankfully we are too busy LIVING life to worry about those things!

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