Ruth Cuadra's Personal Profile
Ruth and Neil Cuadra at the AA&MDSIF Patient Conference
Denver, CO, July 2005
I know that I'm one of the fortunate patients. Many don't survive this journey, yet I've made a successful recovery from AA, MDS, and a bone marrow transplant. Although I still have residual symptoms of my radiation treatment and the transplant, I am able to lead a mostly normal life. I now have the opportunity to give something back to other patients and to assist those who help patients to continue their good work.
AA-MDS-TALK and Marrowforums
In 1996, Vince Wessling started the AA-MDS-TALK listserv (email-based discussion group) to let AA and MDS patients help each other. I participated in the listserv for several years, first as an AA patient and later as an MDS patient. When Vince asked me to help him moderate the discussion I was more than willing to help. I was reading the listserv messages regularly anyway, so it wasn't hard to keep an eye on listserv activity, answer questions, and solve problems as they came up.
Ironically, it's partly through my involvement that the listserv ended, after 10 years, evolving into Marrowforums. My commitment to facilitating personal communication continues, and a web-based forum system is the modern way to do that.
The technical side of running the forum system is managed by my husband, but I'm available to correspond about my experiences and to help people get the support they need.
Public Speaking? Me?
I'm not very fond of public speaking, and being singled out from so many others who have recovered from illness can be embarrassing, but I've consented to it because of the strong gratitude I have for those who helped me.
I've given talks to Red Cross employees who do behind-the-scenes work, such as processing and transporting donated blood. People doing these jobs rarely hear how much their work affects patients and their families, or the thanks we have for them. I let them know that they helped give me my life back and that they helped not just me and other patients, but everyone in our extended families as well.
I did the same when I had a chance to speak to an assembled group of blood donors. Many of them donate regularly for months or years without ever knowing who receives their blood or how much it helps them. I told them "I got your blood" and that others like me get their blood, explaining that every single one of us owes them a great debt of gratitude, whether we know their names or not.
When I got sick, the Aplastic Anemia & Myelodysplastic Syndromes International Foundation (AA&MDSIF) was one of my first sources of information. The Foundation continues to be invaluable in helping patients from all over the world, distributing information packets, advocating for patients, supporting medical research, and holding Patient and Family Conferences where medical professionals speak directly with patients.
I was hungry for information when I attended my first AA&MDSIF Patient Conference in 1998. Since my transplant I have continued to attend Patient Conferences to share my experiences with others, keep up with medical news about treatments for bone marrow failure diseases, and help out where I can.
That led to another invitation, to join the Executive Board of the AA&MDSIF. I served as Secretary from 2004 to 2009, using my background as a technical writer to help write and edit Foundation literature. I continue to volunteer for the AA&MDSIF, attend conferences, and help with fundraisers.
As a member of the AA&MDSIF's Peer Support Network I talk by phone with patients who ask to speak to another patient about the challenges they face. As with Marrowforums, it's not a medical consultation; it's a way they can connect with a patient who has dealt with the same issues while coping with disease and treatment.
I also participate in the Caring Connections service of BMT InfoNet and the Peer Support on Call service of the National Bone Marrow Transplant Link.
I enjoy helping other patients when I can, and I feel it's only fair to give something back because so many others, including patients, supported me.