Connecting with others who have similar life experiences can be powerful for positive change. And it was with that attitude that Shelton resident Susan Rowan responded when her doctor confirmed her long-time suspicions- she was living with MS, too.
“I always have thought that I got MS so that I could be there for my sister and help her along,” said Susan, a 49-year-old mother of three.
But, to understand where she is coming from, it is necessary to have one more detail – Susan Rowan is not one of two, or even three siblings who are battling the same illness. She is one of four.
Debbie
Born in 1961, Debbie was the oldest of the four siblings and the first to encounter multiple sclerosis when she reached her mid-30s.
“I was hiking in the White Mountains with my husband when I noticed that I had burry vision in one of my eyes,” said Debbie, who now lives in Lee, New Hampshire. “It was an unusually hot day and as soon as we got home and cooled down, the blurriness disappeared.”
The one episode was not enough to cause Debbie major concern. In fact, it would be another few years until she was worried enough to take action.
“It was another hot day when the vision issues resurfaced,” she remembered. “I went to my doctor, who referred me to an ophthalmologist, who in turn sent me to a neurologist. But even after all of that, I still wasn’t diagnosed with MS.”
At the time, in 1995, multiple documented incidents were required to diagnose multiple sclerosis. Instead, doctors told Debbie that she had optic neuritis. Shortly thereafter, Debbie began experiencing numbness in her right arm.
“When I went back to the doctor, they told me that if we were planning on having children, that we should do it soon,” she said. “We got pregnant, had a beautiful baby boy, and all the while my symptoms were gone. It wasn’t until he was eight months old that the numbness returned.”
Debbie and her husband then learned that they would soon have twins. Time passed, and on the twins’ nine-month birthday, Debbie was officially diagnosed with multiple sclerosis and began taking medication.
While the family was supportive and wanted to learn more about this mysterious disease, they knew that they could not really understand what Debbie was going through.
“Deb wasn’t right down the road, she was living in another state, so it wasn’t feasible that we could just drop by to see how she was doing,” shared Susan. “I will be the first to admit that I wanted to be there for her, but I just didn’t really get it.”
Then, not two years later, MS came knocking for someone else.
Susan
Born in 1965, Susan was the third daughter but the second to begin experiencing mysterious numbness in her body.
“I used to be a runner,” said Susan. “I could run three to five miles a day. I even competed in road races. But, after my three children were born sometimes I would stumble, or fall down completely.”
Thinking that her trips and falls were due to a childhood ankle injury, Susan never attributed her spills to anything more complicated. She waited a couple of years before mentioning it to her doctor at all.
“I had just turned 32 when my doctor diagnosed me with multiple sclerosis,” she said. “But by that time, I already had a background in the disease. I guess I couldn’t have been any more prepared.”
Looking back, Susan now attributes other incidents to her MS too, such as her inability to hold a tennis racket without it spinning in her hand each time she swung at the ball.
“I hadn’t known that MS could occur in siblings,” said Debbie. “I think it shocked us all.”
While it would be easy for Susan to react negatively to her own diagnosis, she shared a very thoughtful perspective on her experiences.
“I have always thought that I was given multiple sclerosis so that I could be there for Debbie and help her along,” she said. “No one wants to go through this alone. But, together, I thought we would have a better chance of exploring and understanding our options.”
A few years later, Lynn was the third sister to be diagnosed with MS in her 30s.
Lynn
“Lynn had a benign tumor in her brain that was removed when we were just children, and I can remember that I was scared at the time – I didn’t really have the maturity to understand all that was going on,” said Susan. “Growing up, she struggled with vision and gait issues. It was difficult of course in school, but her doctors just attributed it to her brain surgery.”
She moved to Ohio with her husband and started a family. It was not until they tried to have more children that medical records from her childhood surfaced.
Lynn asked her mother to dig up the old paperwork and saw the two words that had so quickly cast a shadow on their lives a few years earlier. There, in the neurologist’s handwriting from decades earlier was the same prognosis – “likely to have multiple sclerosis.”
“I remember my mother telling us that when she dug up the medical records for Lynn to bring to her doctor it was the first time she even noticed it,” said Susan. “I can understand why she never did anything with it- back then MS didn’t mean anything to us, and there wasn’t anything to treat it, either.”
So, at the age of 42, Lynn, too, visited a neurologist and was tested for multiple sclerosis. The results came back positive for MS.
Rebecca
Two weeks later, Lynn’s 18 year-old daughter, Rebecca, was diagnosed, too.
“We couldn’t help but be devastated when we heard the news that our niece Rebecca has MS, too,” said Susan.
And finally, seven years after Lynn was diagnosed her brother was diagnosed after an experience with optic neuritis.
Today, each of the four siblings has continued down his or her separate paths. Debbie’s MS has progressed quite severely, leaving her confined to a wheelchair and no longer able to work as a veterinarian.
“I was able to practice medicine until 2009, but eventually the disease had progressed too far and was too debilitating to keep working,” said Debbie. “Now I am home all of the time, unable to drive. I always loved playing the guitar, but that was too large to manipulate correctly from a wheelchair, so now I play in a ukulele group.”
Susan works two part-time jobs, and while she fatigues easily, she is determined only to use a walk-aid when going out for long trips.
“I have been very aggressive with my treatment,” she said. “I take the medications my doctor recommends; I take steroids, and energy supplements, too. I have also been careful with my diet, cutting out gluten, eggs and milk. Anything and everything I can do now to keep disease progression at bay, I try.”
Lynn, too, is holding steady, battling the same vision and gait issues she has since she was a child. Her daughter, Rebecca, lives in the same home in hopes that together, the mother and daughter can help one another as they navigate their shared illness and multiple obstacles that lie ahead.
While MS is not hereditary, having a first-degree relative such as a parent or sibling with MS does significantly increase an individual's risk of developing the disease. Studies have shown that there is a higher prevalence of certain genes in populations with higher rates of MS. Common genetic factors have also been found in some families where there is more than one person living with multiple sclerosis. Some researchers theorize that MS develops because a person is born with a genetic predisposition to react to some environmental agent that, upon exposure, triggers an immune-mediated response. Sophisticated new techniques for identifying genes are helping to answer questions about the role of genes in the development of MS.
More than 6,000 Connecticut residents are affected by multiple sclerosis, a potentially debilitating disease affecting the central nervous system. Symptoms can include, among other things, numbness in the limbs, difficulties with vision and speech, stiffness, loss of mobility and, in some more severe cases, total paralysis. The progress, severity and specific symptoms of MS in any one person cannot be predicted.
While the cause of MS is still unknown, scientists believe that the interaction of several different factors may be involved. Studies of MS are ongoing in the areas of immunology, epidemiology and genetics. Scientists are also studying infectious agents that may play a role. Understanding what causes MS will speed the process of finding more effective ways to treat it and — ultimately — cure it, or even prevent it from occurring in the first place.
Throughout all the hardships, the siblings have remained a close family. They grew up together, have supported each other, and now they walk together, too.
“I thought about starting a Walk MS team when Debbie was first diagnosed, but I didn’t start the team until 1999.”
Rowan Walkers have been participating in Walk MS each year since its inception and over the years have raised $12,500. Susan counts on her mother, Agnes, and her husband and children to participate each year. Beyond that, the team has had a roster full of extended friends and family, sometimes reaching numbers in the 30s.
“People have come and gone from our team roster, but there is a solid group of about 10 each year,” said Susan, the team’s captain. “Our family more than anything wants to see an end to this disease. Whether it is in our lifetime or our children’s, we want to know that this does not happen to anyone else.”
The 2015 Walk MS, presented by Travelers, will be held at 11 sites across Connecticut over two weekends: Saturday, April 18, Sunday, April 19, Saturday, April 25, and Sunday, April 26. The event offers two options, a 2.5 mile-route and a 5-mile route. The fully accessible venues also feature finish line festivities and lunch compliments of Subway Restaurants and Coca-Cola.
“We walk to raise money for research, but also for the Society so that it can continue to support all those living with multiple sclerosis now who need help,” said Susan. “When Debbie needed somewhere to turn for guidance, the National MS Society was there for her. The staff helped get a lift installed for her front porch, they helped her find a way to modify her van when she was still driving, and knowing that there was an organization out there with her best interests at heart was huge for us. The Society has made living her life as easy as possible, even in the face of MS.”
Last year more than 10,000 participants stepped out or rolled out for Walk MS and raised $1.3 million. Funds raised ensure ongoing scientific research to find better treatments and a cure. Funds also provide for the continuation of vital programs and services offered by the National MS Society, Connecticut Chapter, to people in the state living with MS.
“It’s not just one of us- it’s five of us now,” said Susan. “We are all going to fight this for each and every person battling this disease with us as long as we can.”
For more information or to register for the 2015 Walk MS, presented by Travelers, visit www.ctfightsMS.org.