Statistics on Nephrotic Syndrome

Ever since I heard the words Nephrotic Syndrome, I became one of those people who devours any and all information that I can get my hands on. Our doctor actually instructed us not to go home and get on the computer, in his opinion there was too much information out there that would only worry me. Me, Worry??? When Ethan was diagnosed, we asked how common is this? Since we had never heard of this and neither had our family doctor. We were told that NS is supposed to be rare, with 1 out of 100,000 children diagnosed each year. That lead us to ask our next question, what number was Ethan? We were absolutely shocked and amazed to find out that Ethan was number 12 that year alone in our area. We could not believe that so many new cases were being reported in a disease that is supposed to be rare? Since there is no known cause or cure, we are left with few options for treating this disease. We were also told that Ethan would eventually outgrow this, but when? WHO KNOWS!!!! It could be tomorrow, next year, when he is 15 or 20, they just don't know!!!! Which is very hard for someone like me to comprehend, I like all my ducks in a row, so to speak. This not knowing and waiting is so very hard for me, but then again, some say God is trying to teach me patience. Really God, can't there be another way?? 

I finally came across some recent stats which I found very interesting. As of 2009, 5 children out of 100,000 will be diagnosed with Nephrotic Syndrome each year. 15 out of 100,000 are currently living with Nephrotic Syndrome. Surprisingly, we have not met any other children who share Nephrotic Syndrome with Ethan. Until that day when Ethan is healed, we will keep praying, trusting God to take us step by step and hour by hour and even minute by minute!!!!