What Should I Do?
A diagnosis of Erdheim-Chester Disease can be very frightening. Please know you are not alone. The ECD Global Alliance is here to help you get the information you need. We have members who have been living with ECD for decades. The following are some suggestions that might help with better understanding the disease and what actions you might want to take.
- Learn about ECD. The more you know, the better prepared you will be to fight ECD. With knowledge you can become involved in your care decisions. Being an informed patient is being a smart patient.
- Determine your treatment center. Discuss with your treating doctor about the best place to be treated. There are advantages to being treated in a central Care Center with doctors who are knowledgeable about ECD and who treat multiple patients. There are also advantages to being treated locally by doctors in your community. Some patients find the best option is to be evaluated at a Care Center, with a treatment plan being developed there. Treatment can sometimes then be transferred to a local physician with only occasional follow-ups required at a central Care Center. You can select the care model that works best for you.
- Register with the ECD Global Alliance. By registering with the ECD Global Alliance you will become part of the community that provides support to patients, works to ensure clear and up-to-date ECD information is available to everyone, and works to find better treatment options and ultimately a cure. Everyone affected or interested in ECD is strongly encouraged to join the community.
- Connect with others in the ECD Community. The ECD Global Alliance offers patients and their families and friends different ways to connect with others in the community. Many people find it helpful to be in communication with others who share similar situations.
- Learn about studies. There is ECD research that is happening in the US, Europe and Israel. Some research studies are taking place in laboratories. Other are monitoring patients to learn more about how the disease affects patients. Still other studies are focused on testing new and promising treatments. By joining in trials you will have access to the latest treatments for yourself and you will be helping the community to learn more about ECD.
Last updated: February 12, 2016