Sharing Fantastic News!

Thanks to the considerable and determined efforts of my doctors, the drug company has agreed to donate a three month supply of Enbrel. This news came a few hours ago with a phone call from my specialist (who interrupted his vacation to follow up on the progress of the appeal).

Since hearing the news I've had a huge grin on my face - along with more than a few happy tears. Although I've been trying hard not to think about it, thoughts about how to finance this drug have dominated my thoughts of late and it's such a huge relief to hear the decision. And of course a much bigger relief that the answer was yes!

We don't know if Enbrel will help, I'll be the very first Erdheim Chester Disease patient to try it. However, I'm beyond grateful for the opportunity to see if it offers any improvement. If it works to slow down the progression of my illness, we'll need to look at avenues for financing of the drug beyond the next three months. But we can't worry about that right now, we just have to hope that this stuff helps!

I'll hear more next Monday when my doctor is back from vacation, I'll keep you updated. I know that many of you have offered your good wishes and prayers for good news. I know that they all helped, and I thank you!