By Karen E. Butler, Vice President of Marketing and Public Relations
Multiple sclerosis is more prevalent in women of childbearing age than in any other demographic. When a young woman is diagnosed with multiple sclerosis, one of the first questions almost always revolves around the effects of the illness on pregnancy, and vice versa. Just a month before Jennifer Ganley, 32, and her husband, Jeff, had planned to start trying for a family, Jennifer received the life changing news that she had relapsing-remitting multiple sclerosis, an illness with potentially debilitating symptoms, that when exacerbated, presented her with numbness and tingling in her hands and chronic pain in her lower back.
“When I was diagnosed, I actually was well aware of the effects of the illness,” remembered Jennifer, a clinical specialist with St. Jude Medical, Inc. “My mother’s best friend has MS. Growing up, I saw MS rob her of more and more mobility. Initially, I was a wreck. I thought my life was over. All I could envision was living my life in a wheelchair and being cheated of what I wanted most – a family.”
Multiple sclerosis is a chronic disease of the central nervous system. It is an unpredictable condition in which symptoms can be relatively benign, disabling or, in worst case scenarios, devastating. Some individuals with MS may be mildly affected, while others may experience various degrees of paralysis. More than 6,000 Connecticut residents, like Jennifer, battle the erratic and often baffling effects of multiple sclerosis.
Immediately following her diagnosis, Jennifer, who lives in East Hartford, began researching the possible risks associated with pregnancy and a persistent illness, such as multiple sclerosis. She brought her questions and concerns to her neurologist Peter Wade, M.D., director of neurology at the Mandell Center for Multiple Sclerosis. He assured her that she and Jeff could still have a family, even in the face of MS.
According to the National MS Society, pregnancy does not appear to speed up the course or worsen the effects of MS. And there is no evidence that MS causes infertility. Several studies of large numbers of women have repeatedly demonstrated that pregnancy, labor, delivery and the incidence of fetal complications are no different in women who have MS than in control groups.
Women are generally advised to stop treatment using disease-modifying medications one to two menstrual cycles prior to trying to conceive. In Jennifer’s case, she decided to delay ongoing therapy for her MS until after she has a child.
“We really wanted to stick to the plan; we didn’t want my diagnosis to rob us of our commitment to begin a family a year after our marriage,” said Jennifer. “I was diagnosed last October and the next month we started trying. In April, I received the exciting news that I was pregnant.”
Before 1950 most women with MS were counseled to avoid pregnancy because of the belief that it might worsen the effects of their MS. However, studies show the opposite is true. In most cases pregnancy actually reduces the number of MS exacerbations, especially in the second and third trimesters.
“It was amazing; almost as soon as I realized I was pregnant, most of my symptoms vanished,” exclaimed Jennifer. “Until then, every day I was reminded that I have MS. My symptoms were constant. My pregnancy has provided a reprieve from the numbness and tingling, the pain and the overwhelming fatigue associated with MS.”
Jennifer is receiving prenatal care at S.H.E Medical Associates, an affiliate of Saint Francis Healthcare Partners, located in Hartford.
“Pregnancy is known to be accompanied with an increase in a number of circulating proteins and other factors that are natural immunosuppressants,” said Elizabeth Jensen, certified nurse midwife and advanced practice nurse with S.H.E. Medical Associates. “In addition, levels of natural corticosteroids are higher in pregnant than nonpregnant women. Researchers believe these may be some of the reasons why women with MS tend to do well during pregnancy.”
Jenifer, who is due in December, has little apprehension about postpartum, even though she understands exacerbation rates tend to rise in the first three to six months after giving birth. The risk of a relapse during the postpartum period is estimated to be 20 to 40 percent. However, studies indicate relapses do not appear to contribute to increased long-term disability. One study showed that using IV steroids once a month for the first six months after delivery seemed to reduce the relapse rate compared with controls. However, there was no difference in neurological function or progression, and steroids have their own side effects. Most doctors in the U.S. do not practice as standard procedure the use of IV steroids or other medications, such as IV immunoglobulin, after delivery and during the postpartum period.
According to Jensen, the only special concerns faced by pregnant women who have MS center around gait difficulties as women with MS may find these worsen during late pregnancy as the mothers-to-be become heavier and their center of gravity shifts. Increased use of assistive devices may be necessary, and may include the use of a wheelchair at times. Bladder and bowel problems, which occur in all pregnant women, may be aggravated in women with MS who have a pre-existing urinary or bowel dysfunction. Pregnant women with MS may also be more subjected to fatigue during the last few months of pregnancy.
Jennifer plans to breastfeed her newborn. There is no evidence that breastfeeding increases relapses. Doctors recommend, however, that mothers with MS avoid the use of disease-modifying drugs because, as with many other medications, it is not known if these drugs affect breast milk and ultimately, the child.
Researchers believe MS has a genetic component. However, the chance that a child born to a parent with MS will himself develop MS is quite slim. Studies indicate that children of women with MS have a three to five percent lifetime chance of developing multiple sclerosis. In other words, the odds are 24 to one against having MS.
“Jeff and I are trying to take things one day at a time,” said Jennifer, who will celebrate her second wedding anniversary in November. “We are hoping for the best, but preparing for anything, including relapse. Fortunately, our extended families live nearby, so we have a strong support system.”
Within a few months after her diagnosis, Jennifer was making plans to attend Walk MS. Collaborating with her mother, Lois Gottlieb, to form a fundraising team proved to be empowering for the newly pregnant mom-to-be. Expecting to raise just a couple thousand dollars, her 76-member team went on to raise almost $10,000 for the 2013 event.
“At first I was apprehensive to share with friends, past and present, my diagnosis of MS,” said Jennifer, with a smile. “However, when I announced to my friends on Facebook that I had been diagnosed with multiple sclerosis, the outpouring of support has been moving and powerful. The news, difficult as it is, has served to help me reconnect with friends with whom I haven’t spoken with in years. Their words of encouragement and demonstrations of support give me hope.”
Jeff and Jennifer are looking forward to next year’s walk, when baby will make three.
“I look forward to introducing my newborn to his or her very first Walk MS,” said Jennifer, who already has arranged for daycare, as she plans to return to work after maternity leave. “We’re in this together. I couldn’t ask for a more supportive husband and family. My mother came up with our team name, Team Jenga, with the idea that you’re only as strong as your foundation. I’m fortunate to have the best of foundations supporting me and the battle I face. I am not in this alone.”
The 2014 Walk MS will be held at 12 sites across Connecticut Sunday, April 6. Although one doesn’t have to actually have to “walk” to participate, the event offers two options, a 2.5 mile-route and a 5-mile route. The fully accessible venue also features finish line festivities and lunch compliments of Subway Restaurants and Coca-Cola. Last year more than 10,000 participants stepped out or rolled out to raise $1.2 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.
For more information about pregnancy and MS, visit www.nationalMSsociety.org. For more information or to register for the 2014 Walk MS, presented by Travelers, visit www.ctfightsMS.org.