I've been busy trying to get our house back in order this week, and as part of going through the mail took a couple of minutes to spit into a testtube. Why? My Mom was diagnosed with MS about 5 years ago, and at this point there is no known cause or cure. I read about a study to test for a possible genetic link currently being conducted at Brigham & Women's hospital in Boston. It's the Genes and Environment in Multiple Sclerosis (GEMS) Research Study. They are looking for first degree relatives of someone with MS in a certain age range (18-50) I will receive no compensation for participating but that's not my reason for signing up anyway. My Mom's diagnosis was a shock to all of us as she was diagnosed late in life, and it's hard to see her struggle to walk.
Once my spit sample has been analyzed (I think they use it to collect an initial DNA sample), I will need to submit blood samples. I may be asked to have an MRI. The only test that I would maybe need to go to Boston for would be the MRI. They will compensate for some of the travel expenses, and since my sister lives there it would be nice to have an excuse to go. All the other samples/tests can either be done at home like the saliva sample or at local facilities.
I mentioned to a friend of mine that I was doing this, and she asked if I was scared. I said no it's just a blood test and an MRI. Then she said, but what if they do find a genetic component? I have to admit I hadn't really thought it through that far. Most of these studies take years of research before any conclusions, and this is one where you agree to followup tests for years, but at the same time, I feel pretty helpless with my Mom, so if I could do one little thing to help her or prevent the disease for someone else why not? I guess in the back of my mind, there is a small bit that would be worried that they find something, but if there is a link, better to find out early. Since there is no cure the earlier you start therapy, the better you can slow the progression. At the same time, when I signed the consent forms, it specifically said that they would not provide individual results, although would advise if the MRI showed evidence of a cerebral aneurysm. Which makes sense, this is not meant to be a pre screen test, but I do wonder a little bit, that if they do find that there is a genetic component, wouldn't they tell those who had proved it? If nothing else, I figure if they find that MS is based on genetic, environmental or immune factors, I'll be among the first to know.