ECD Conference Post #2

 The Erdheim Chester Disease Conference has been very good. Just met someone else who has ECD and is on the same treatment protocol that I am. Apparently if Kineret is working one should see a reduction in bone pain, which has not happened for me yet.

Similarly a few people I met did not have a good response and had to increase the amount of Kineret they were taking on a daily basis to two shots a day (I take one).  For this person Kineret has not reduced his symptoms, only slowed down the progress of the disease.

It turns out that my doctor made it clear at the prior days medical symposium that he felt jumping straight to more aggressive courses of treatment (which generally calls for the use of a drug called Interferon) is a mistake. This would explain why he hasn’t put me on a treatment of Interferon.  In some ways I want the Interferon because I think that bigger is better.

Perhaps this is a viewpoint that is to guided by growing up during the cold war. In other ways I might also want the Interferon because everyone else is getting it. Sort of like my daughter who insists that she is the only one who doesn’t have a IPhone.

I’m not sure jealousy should be the guiding force for my medical treatment. Its possible I need to rise above the mental state of a thirteen year old that just wants what everyone else has and accept what my doctors say. They are the experts after all.