Still waiting

I'd mentioned a couple of posts back that our insurance company had refused coverage for an experimental drug. My husband (not one to give up easily) launched an appeal to have them reconsider their decision. Still a bit fat no despite his rather compelling plea to let me give this a try. They've made it very clear that their company will not fund any treatments for Erdheim Chester Disease since nothing has been proven to help. Same position coming from our government health agency.

My doctor hasn't given up hope, he's approaching the drug company again with results of the research conducted by my medical team, as well as seeking out alternate potential donors. I won't be giving up hope either until he raises the white flag.

It makes me wonder however how anyone who isn't wealthy can invest hope in a new treatment. I realize this isn't the case with all diseases, but it comes back again to not having enough ECD patients to make it worth anyone's while. While I say my prayers for anyone who is ill, I'm wishing extra hard for anyone unlucky enough to be dealt a very rare condition. This certainly has been a learning experience in so many ways.

Speaking of learning, I've found it quite difficult to explain exactly what ECD is to people who've not heard of it - which is basically everybody. I dread going to any practitioner who asks if there have been any changes in my health status since my last appointment. Yesterday I came across a description of Erdheim Chester Disease that is succinct and I believe, fairly clear for the lay person to understand. I think I'm going to take a suggestion from the ECD support group, print this one out and give it to anyone who needs to understand what's happening to my body.

http://www.mayoclinic.org/medical-edge-newspaper-2010/jun-18a.html

Thanks to Dr. Castle at the Mayo Clinic for this posting.

fyi - a couple of small corrections. To my knowledge, there are closer to 300 known cases (a very select club I belong to), and ECD is as yet unclassified. In the future it may be designated a cancer, auto-immune disease (or just as a plain old weird aberration of nature?)