Victory Letters from AA& MDS

From: Bruce Lande
Email: sales@aebiz.com
Date: 6/6/2001
Time: 12:23:05 AM
Remote Name: 24.169.74.83

Comments

People, Not Statistics Tell The Story of AA&MDS When you meet someone like Adrian Menapace or Bruce MacCready—optimistic and living life to the fullest, despite being stricken with AA and MDS—you suddenly realize that disease statistics are not all that important. “When you read the literature on the diseases it can be devastating,” said Adrian who has been living successfully with AA since being diagnosed in 1987 at the age of 25. “I think that learning as much as possible about the diseases can be very beneficial for newly diagnosed people. But medical literature can be so cold and impersonal, and the downside of reading it can be perceiving oneself as a statistic, or a medical case, rather than as a complex and valuable individual. People aren’t statistics. Each person’s experience is unique. People can and do recover. It is important to be optimistic.” Bruce wholeheartedly agrees. “Three years ago when I was diagnosed, there weren’t very many positive aspects to MDS, but now we have several successful treatment options,” he said. “Over the next three years, we will probably see twice as much progress, especially with mini-transplants. Keeping your options open and having a positive attitude will let you take advantage of those opportunities.” One key to keeping a positive attitude is to become actively involved in your own treatment, they said. “I do think it is important to do a lot of research and learn everything you can about the disease,” Adrian said. “AA&MDSIF is one great source of information. The resources the foundation offers are wonderful.” “Having information is the best opportunity for success,” Bruce concurred. “I advise people to take charge of their treatment and to recognize that if they do the research they probably will know more about the disease and treatments available than most doctors. Don’t be afraid to ferret out treatment options and talk with your doctor about them. For example, doctors won’t always think to volunteer you for a clinical trial, but if you find an appropriate one and suggest it, they’ll probably agree.” Bruce and Adrian also strongly encourage newly diagnosed patients to get in contact with other people who have AA or MDS. “It is such a relief and source of support for patients to talk to each other, to have the opportunity to share experiences, and to realize they are not alone,” Adrian said. “When I was first diagnosed there were not readily available support groups and patients to talk to. Getting connected with that network, through the AA&MDSIF, was one of the most helpful things I did.” “I think having support like that is very important,” said Bruce, who helped create AA&MDSIF’s California Support Group. “ People are often afraid when they come to the first support group meeting, but after one or two times they begin to see the light at the end of the tunnel. That is a very satisfying result. I feel very rewarded by the support that I get and that I am able to give to other people.” Building a support network is also critical for caregivers of patients with AA or MDS, Adrian and Bruce said. “Caregivers are in great need of support,” Bruce said. “It is very important for them to get in contact with other people in the same position. Caregivers often feel frustrated and do not have a lot of experience in dealing with a severe illness. It can be very heartening and comforting to know other people are in the same situation.” “These diseases are very scary for family members and friends,” Adrian agreed. “In many ways it is harder for them than it is for us. I know it was very difficult for my mother when I was first diagnosed, because she was not sure of the outcome or what she could do to help.” Both Bruce and Adrian refuse to dwell on the negative aspects of their illnesses, but prefer to look instead at the positive changes the diseases have brought. For instance, Adrian’s experience with AA led her to change careers and become a nurse. “We learn from all of the experiences in our life, whether they are good or bad,” Adrian said. “Regardless of your experience with AA or MDS, positive things can come out of it, whether it is becoming closer to your family or learning more about yourself and more constructive ways to approach life. The important thing is to take advantage of those opportunities on a daily basis.”