Fairly early in my battle with MDS I found the Internet web sites for MDS patients. Marrowforums is an excellent one, and the MDS Foundation also sponsors a patient web site.

These services allow MDS patients to ask questions and receive answers regarding their MDS disease and treatments. Over the years I met many wonderful people who helped me to cope with MDS. With some I developed a close relationship, contacting them directly via email or by phone.

I also volunteered to receive calls from other MDS patients, some recently diagnosed. These calls allowed me to give encouragement to new patients. Being able to discuss your disease with another patient can help you cope with MDS. Medical advice is not the purpose of these discussions, rather it is to listen and perhaps relate your experiences in dealing with MDS. Over the years I have talked with many other MDS patients and it is a rewarding experience.

The AA&MDSIF Patient Conferences are a wonderful way to meet other patients and hear truly expert doctors speak on treatments for MDS. The group meetings with other MDS patients are always very encouraging and informative. I encourage any MDS patient and their caregivers to attend these conferences.