Friday, June 28, 2013

NORD Approval

We got some amazing news this week!  NORD, the National Organization for Rare Disorders has approved my application for the Cushing's Syndrome Assistance Program that mainly helps pay for the testing leading to a diagnosis of Cushing's Syndrome.  This means that they will cover all "reasonable expenses" for testing, doctors appointments, and travel for testing and doctor appointments related to the diagnosis and treatment of Cushing's.  Of course it is for as long as they have funds to do so, and the approval is good through the end of the year at which point I would have to re-apply.  This is such AMAZING news!  Britt called to tell me the news and read me the letter as I stood there bawling in Wal-Mart.  So then I had to call my mother and tell her the news, and bawled some more!  I'm sure I scared some shoppers that day. 
I still haven't found out all the details about how it works, but I know that anything over $5K (for individual expenses) has to be pre-approved, so an IPSS is probably out but an MRI *could* be in depending on where I go (Prices for the 3T dynamic MRI ranged from $2K-$8K depending on the location).  It also means that I don't have to wait and do just one or two tests a month because that is all we could afford out-of-pocket.  It will GREATLY speed up the diagnosis process, so I hope I knock out some high results this month!  Things are looking up!  Dr. F also gave me the go-ahead to test as many times as I want, so depending on what NORD feels is reasonable, I might have my diagnosis in just another couple months!  (Some of the tests take a few weeks to get results, and I am not sure just how many I have to get back as high before he is confident enough to make it official.)

1 comment:

  1. That is wonderful news! I hope you can get an official diagnosis very soon!

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