Please contact Benita Marcus at firstname.lastname@example.org or (301) 279-7202 x102 to interview these or other MDS patients in your area willing to share their story.
MDS can strike anyone at any age, though the average age of diagnosis is age 62. MDS and its treatments will vary from person to person, and survival rates depend on the severity of the disease. While a bone marrow transplant is an option for many younger patients lucky enough to find a match and healthy enough to undergo the arduous procedure, many patients rely on drug therapies and transfusions as their lifeline.
A 16-year MDS survivor who has surpassed the two to five years he was given when diagnosed at age 55, the former research scientist has the MDS subtype known as RARS (refractory anemia with ring sideroblasts). He struggled to come to grips with his disease progressing from a “Why me?” attitude to one of acceptance. He is buoyed by a strong faith and the love of his wife, Suzy, who he married one year into his diagnosis. While he makes concessions to his disease, he believes that MDS is part of who he is, but it not his identity. He recently completed his degree in Theology. Dr. Henry lectures and writes on current-event issues relating to science and morality. For his 70th birthday, he drove a NASCAR race car at speeds over 140 miles per hour.
Larry was diagnosed in July 2008 at age 62. He says that “he may have MDS, but MDS does not have me.” A Vietnam veteran, who reaches out to other veterans battling MDS, he was referred to a hematologist after his primary care physician noticed that his hemoglobin count had been dropping. Initially placed in the low-risk “watch and wait” category, his disease was monitored without treatment. After two years, his disease worsened and he began receiving treatment comprised of injections to boost his hemoglobin and red-blood cell count as well as blood transfusions that occur every three to four months. He is stable, but bothered by a lack of energy and fatigue. Larry encourages patients to be self-advocates and understand the course of treatment prescribed by their physician. He retains his own health records and keeps track of his CBC (complete blood count) results. Larry restores cars – his latest project being a 1966 Mustang convertible.
Diagnosed in 2005 at age 70, Miller began experiencing severe fatigue. Her physician placed her in the low-risk category so she did not require blood transfusions. This low-risk category, termed “watch-and-wait” required careful monitoring by her physician to see whether medical intervention would be required. Mary was not comfortable waiting and wanted to be more proactive in making sure her problems did not get worse. She became her own advocate researching changes in diet and nutrition. Incorporating these changes, along with coping strategies for stress, exercise, family support and spirituality, Mary has maintained her quality of life and continues to works part-time as a social worker.