The MDS Beacon™

Roger Contreras was a healthy, hardworking Texan construction worker when walking up a flight of stairs and carrying bricks started to become difficult. His first hospital visit in decades and multiple tests later, doctors diagnosed him with myelodysplastic syndrome (MDS) in July 2008.

Contreras came from a family with a clean medical history, free of cancer and high blood pressure. It came as a surprise, then, that a rare disease like MDS would choose Roger, who, at the time, “was building hospitals, not going to them.” Yet within the year of his diagnosis, his Web site, IHaveMDS.com, and its corresponding blog have reached out to support many other MDS patients, friends, and family.

In an interview with The MDS Beacon, he tells of how he wrote online journal entries as he began months of hospital visits and blood transfusions. He was lonely, without information, and in need of support.

“There was no one to talk to, there were no answers – I couldn’t find any answers,” says Contreras.

His blog served as an outlet for the thoughts, emotions, and daily lifestyle of a man decades younger than the average MDS patient. At the same time, he gathered information for his own reference and decided to share it with the public on his Web site. His online sources eventually attracted others who were scouring the Web for MDS, all confused by the foreign medical terms and looking to hear it firsthand from others going through it. Comments left by subscribers illustrate how encouraging his blogging honesty has been.

Contreras’ own support system has been his family, who he says has been there from the beginning. In March 2009 when he was eligible for a bone marrow transplant, the only curative treatment for MDS currently available, his sister volunteered to be his donor. In addition, his family was able to sit in the hospital room with him during the procedure.

Although he has a catheter in his chest, no hair due to chemotherapy, and still needs daily transfusions to ensure a healthy blood count and no neurological complications, Roger Contreras is well on his way to recovery. His voice was strong, matter-of-fact, yet urgent during the interview as he spoke of how the transplant changed the focus of his blog and Web site.

“Up until transplant time, it was all about me and what I was going through,” remembers Contreras. “But now it’s more about trying to get information out, trying to reach people, and looking for donors.”

His main concern is awareness. Not only had he never heard of MDS before his diagnosis, but blood donation was also a foreign concept. He sees importance in getting more minorities involved because a transplant becomes much more difficult and time-consuming when the availability of matching donors is limited. Contreras wants to reach out to communities, especially to men like himself, who would not hesitate to donate if they knew about its need or importance in saving lives. He has already organized a local blood drive for this October and is considering coordinating a July event as well.

His Web site and blog are not only records of his MDS journey, but also forums to help others. There are requests for prayers, blood donations, and support for Tami, a 44-year-old mother diagnosed with MDS, and Grant, a three-year-old boy recently diagnosed with acute lymphoblastic leukemia.

Contreras knows how easy it is to get blind-sided and lost by all the medical terms when a disease with a name like “myelodysplastic syndrome” comes knocking. However, as a fighting survivor, he wants to give hope to anybody who will be following in his footsteps.

His words are comforting and truthful: “You’re not alone; there are other people out there. The more knowledge you have, the less fear you’ll have going into it. Fear of the unknown is the greatest thing. The more answers you have, the better it is.”