“For me, [multiple sclerosis (MS)] presented itself shortly after the birth of my second son. I had these symptoms; I had this profound fatigue that I didn’t have with my first child,” said Terrie Livingston at a recent Wilson Center event about the growing threat of non-communicable diseases (NCDs) on maternal health. Livingston is the Head of Patient Outcomes and Solutions at EMD Serono, a business of Merck KGaA, Darmstadt, Germany.
“MS primarily affects women, with the average age of diagnosis at about 33 years of age…when women are really thinking about having a family,” said Livingston. Livingston didn’t associate her symptoms with MS initially, and assumed they were due to either her recent pregnancy or the demands of caring for a newborn.
Pregnancy is an immunotolerant state, in which the immune system is able to tolerate a foreign substance, i.e. placenta and fetus. Due to changes in hormones, there are fewer relapses in MS patients who are pregnant, said Livingston. There is, however, a significant increase in the number and severity of relapses postpartum, she said. Symptoms of MS can be mistaken for other common symptoms of pregnancy, complicating diagnosis. In fact, it was about two years between the symptoms presenting and Livingston actually receiving the diagnosis of MS.
Misconceptions about the disease adversely impact a woman’s perception of her ability to become pregnant. Livingston recalled a time when physicians discouraged women with MS from having a family, telling them that it wouldn’t be possible. In fact, the U.S. has seen an increase in the prevalence of pregnancies in MS patients.
It’s important to raise awareness around race, disparities, and social determinants of health when it comes to MS and other non-communicable diseases, said Livingston. “Just like the changing face of the U.S., MS is also changing,” she said. What was once thought of as a disease that primarily affected Caucasian women, MS is now most prevalent in African American women. As an Asian American, Livingston attributes some of her delayed diagnosis to the fact that she’s “not the typical MS patient.”
Also lacking is an awareness of the links between MS and other chronic illnesses —like hypothyroidism, inflammatory diseases, hypertension, diabetes, and mood disorders. 40 to 60 percent of MS patients have mood disorders that include anxiety and depression. The heightened risk of other chronic co-morbidities is why it is important for individuals with MS to plan ahead when it comes to pregnancy, said Livingston. Pregnant women with MS need integrated care plans that are tailored to their needs based on where they are in their journey.
Since Livingston was diagnosed in 2006, the number of Disease-Modifying Therapies (DMTs) available for MS has increased from 4 to 17. “If you think about from 2006 to now, that’s 1 DMT that was approved every single year over the 13 and a half years,” she said. This gives providers and patients more options for treatment, but importantly, Livingston said, “it also gives patients hope.”
There is a “big opportunity” to provide education to patients with MS, and we need to continue addressing those unanswered tough questions, said Livingston. In her role as an MS patient advocate she is uniquely placed to drive research efforts and tackle topics around co-morbidities, symptom management, race, ethnicity, and healthcare disparities. “Living with MS, it has allowed me to impact people in a way that I could have never imagined,” said Livingston.