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At the time I was diagnosed with multiple sclerosis there was only one other person I knew who had it, my Aunt Loretta. She died when I was four years old and my only memory of her was that she was in a wheelchair, mumbling and moaning because she could not talk. As I lay paralyzed from the waist down in my hospital bed, I remember members of my family saying my symptoms looked a lot like Aunt Loretta’s.

It was also at that moment I decided to start researching MS. I wanted to ask my family members who knew Loretta what she did to manage her MS. Unfortunately, I didn’t like what I heard about my aunt’s MS journey. She was diagnosed in the 1970s, long before the major treatment breakthroughs. She went to a neurologist and didn’t like the prognosis, so she never went back. She never tried any MS treatments. By all accounts, once she got the diagnosis and opinions of the doctors, she gave up.

Now, I am by no means speaking negatively of my aunt. In fact, quite the opposite. If it wasn’t for the lessons I learned from my cousins about my aunt’s MS experience, I would not have become the MS advocate I am today. I would not have gotten into MS research, I would not have tried risky new MS treatments, and I wouldn’t have paid close and careful attention to my neurologist’s recommendations. Her experience made me a better MS patient. 

While MS isn’t considered hereditary, there is an increased risk for family members developing the disease. This risk is increased substantially for identical twins. According to Atrium Health, for first-degree relatives, the risk of developing MS, if a close family member has MS, is about one in 334; but for identical twins, the risk increases to one in four. 

MS has other risk factors such as gender, geographical location, and race. Nearly three time as many women have MS compared to men. There are more instances of MS for people who live further from the equator than those who live closer. MS is also more prevalent in European or Scandinavian ancestry. In my case, I am a male, with European and Scandinavian ancestry, who grew up way north of the equator in Boston, Massachusetts. So, of the four risk factors discussed in this article (family relation, gender, location, and race), I am affected by three of them. 

The good news is that the family connection is only one piece of the puzzle when it comes to diagnosing MS. Just because someone in your family has MS doesn’t mean that you’ll get it. Or if you are thinking about having kids, it doesn’t mean that you will pass it on to your kids. The family connection is just one of the many risk factors linked to MS. However, leaning on your family and learning from their experience is critical to understanding your MS journey.