Robert Weinberg

Robert Weinberg, USA

I was first diagnosed with MDS in May 1998 at the age of 48. I had always been a regular and an avid morning swimmer but had begun to notice that the people I typically passed in the pool were starting to pass me. I found myself having less and less energy to swim, run or do any type of physical exercise. I even found myself taking a nap on a Saturday afternoon, which was completely out of character.

I visited my general physician who tested my hemoglobin levels. With a below normal result of 7.5, I was referred to a hematologist for more testing. After a bone marrow test, I was diagnosed with MDS. I was told by my hematologist that I was ‘low risk’ which meant that so long as I managed my iron levels, I could go as long as 15 years on transfusions until the build-up of antibodies rendered them ineffective. So immediately upon diagnosis, my life began to revolve around blood transfusions. They began being four weeks apart, but by the end of the first year I was receiving them every 14 days. I had tried several other therapies with little success and considered a bone marrow transplant, but ultimately decided against the procedure.

When I was first diagnosed with MDS I knew nothing about the disease. I began to research on my own and came across the MDS Foundation. I reached out for more information which proved to be a great help. Also, as a lawyer by trade, with experience in advising non-profits and establishing foundations, I volunteered my services to the MDS Foundation to help build their organization and remain an active member of their board of directors. I continued working as a lawyer for more than 11 years after my diagnosis.  Finally, as the antibodies built-up resulting in an increased frequency of transfusions, the severe anemia began to affect my ability to work. In 2009, with great reluctance and sorrow, I resigned as partner in a law firm. I am now on reduced status working about five hours a week for the law firm. In addition to my volunteer work with the Foundation, I also spend time revising a three volume textbook on estate planning that I authored before I became ill.

In early 2011, I traveled with my wife, who is a high school French teacher, to southern France where we lived for five months.  When she was granted a sabbatical, we decided we would not let my MDS stop us.  With the help of physicians I had met through the MDS Foundation, I arranged to get transfusions at Centre Hopital Archet in Nice and Hoptial Princesse Grace in Monaco.  I am indebted to many devoted nurses and health care providers in three countries. Today I am back in the US and receiving blood transfusions every 7 to 9 days. The build-up of antibodies from the high amount of transfusions I have received over the years not only is causing the transfused blood to be destroyed more quickly, but it is also making it harder and harder to find blood that matches. I am not worried about infection from low white cells or bleeding from depressed platelets, as much as I am worried that I will be unable to sustain an adequate hemoglobin level because of the rarity of matching blood amidst more and more frequent need for it.  Although I am not swimming regularly anymore, I enjoy taking daily walks with my seven-year-old St. Bernard or going for relaxing sails with my wife at the seashore.

I am very thankful for the therapies that are available to help both myself and others living with blood disorders.  I am glad to see that therapies exist that are helpful to many people, even if not to me, and believe that they should be made available to all, regardless of age.  I am hopeful that scientists will continue to research and develop new treatments for MDS, and I soon hope to find a clinical trial for a new agent to lessen my transfusion requirement.