ECD Conference Post #1

Just watched a great video on the birth of the Erdheim Chester Disease Global Alliance. The video shows the personal stories of a few different people and how they found out they had the disease. It was very touching. It also highlighted the issues related to diagnosis (lack of well informed doctors), common trend of initial cancer diagnosis, and a general lack of information found.

One of the things I hope will come out of the medical symposium that is a part of the conference is a common course of treatment. I will discuss this some in my next post when I talk about the difference between Kineret and Interferon. Those of us looking for answers would really appreciate knowing what the common course of treatment is for our form of the disease. This is of course easier to want then it is to accomplish when so few people have the disease and it represents itself in so many different forms.

Final thought…one of the doctors present from the National Institute of Health mentioned that the issue with medical literature isn’t writing papers. It is easy to write papers about a disease and how you think it should be treated. What is difficult is to get the right people to read those papers and to hear about our disease so they will be well informed when they meet a patient who has ECD.  This is true on so many levels.

Its easy to complain, Its easy to shout, Its easy to cry…what’s hard is to get the right people to hear those complaints, shouts, and tears.