Dear Editor,
I have Multiple Myeloma (MM), bone marrow cancer. A little over a year ago, one of my closest friends died from immune system issues. She had been diagnosed with multiple myeloma just a few weeks before my diagnosis. We always thought it was strange that we both had a relatively rare disease. Our doctors thought it was strange too.
I was distraught and upset at losing my friend, and one night shortly after her passing I wrote down the names of all the people I knew who had multiple myeloma. Then I weeded out those people whom I had met after my diagnosis, and then I realized – with a sinking sensation – that there was something wrong with the list.
I knew eight people personally who had or have MM in Tioga County, N.Y., where I live. Statistically, since MM occurs in one out of 20,000 people, that means I should know 160,000 people in Tioga County. I do not know that many people. And Tioga County has a population of 50,478 per the 2012 census. And I only listed the people that I knew personally from before diagnosis.
I called my hematologist at Weill-Cornell in New York City. He thought I had made a mistake. I reiterated what I had done. I said I did not count any people with MM that I had not met prior to diagnosis, and so there could be many more people than on my personal list. When I went down to see him for treatment and check-up, I spoke to the head of the Multiple Myeloma Clinic at Cornell. He said I probably found a cluster. In other words, there is some factor that may lead to a much higher than expected occurrence of MM in my home area.
MM is rarely thought of as a hereditary disease. There are few known causes, such as high exposure to certain chemicals or substances, but not everybody exposed to these develops MM. There are also certain genetic factors that make it more likely for someone to develop MM. So most likely, the cause may be a combination of environmental and genetic factors.
So now I would like to know how many other people in my home area have MM. And I would like to try to narrow down the possible causes. I ended up developing a questionnaire that was reviewed and edited by Dr. Niesvizky and Dr. Mark, both at Weill-Cornell in Manhattan, as well as Dr. Comenzo, at Tufts Medical in Boston. All three specialize in MM.
I need anyone who has MM to contact me. I can be reached at oliviach@stny.rr.com or by calling (607) 972-7645. I would like to send everyone who contacts me a questionnaire. All responses will be kept strictly confidential. So please send me your name and an address.
So if you know of anyone who has bone marrow cancer, please ask them to contact me. I also have become a repository of helpful information, ranging from disability to free flights and places to stay near MM clinics.
Sincerely,
Olivia Chin
Owego, N.Y.
