For many women, planning to have a baby for the first time can be a whirlwind. There are doctors’ appointments and scans to book, names to pick out, and a mountain of questions to ask about what to expect when you’re expecting.

But for women living with multiple sclerosis (MS), starting a family comes with an extra layer of complexity. Planning a pregnancy while managing MS means thinking about how pregnancy might affect symptoms, what treatments are safe during pregnancy, and how to juggle the demands of motherhood, a career, and the unpredictability of the disease.

What is MS?

MS is a chronic condition that affects the brain and spinal cord. The immune system mistakenly attacks the protective covering of nerve fibers—called myelin—in a process known as demyelination. This leads to a breakdown in effective communication between the brain and the rest of the body.

Symptoms can range from mild to severe and vary from person to person, but often include fatigue, difficulty walking, numbness or tingling, muscle weakness, vision problems, and issues with coordination or balance.

Right now, there is no cure for MS, but there are treatments that can help manage symptoms, reduce flare-ups (also called relapses), and slow the progression of the disease. Many people with MS go on to live full, active lives—including becoming parents.

Concerns About Pregnancy with MS

MS disease outcomes are highly variable, making family planning decisions even more complicated for women living with the condition. Ultimately, many women decide not to have children due to fears about future MS-related disability.

“Because MS disproportionately affects women, particularly those of childbearing age, the question of pregnancy is one that comes up very early on when we discuss treatment,” says Professor Jeannette Lechner-Scott, Deputy Director of HMRI’s Immune Health Research Program, Conjoint Professor at the University of Newcastle, and Senior Staff Specialist at the John Hunter Hospital’s Department of Neurology.

“In the past, women with MS were discouraged from having children due to a belief that pregnancy would worsen their symptoms and that they would not be able to care for their children.”

“Today we know that is not the case. We can keep our patients quite healthy so they can raise a family and look after them. However, the relationship between newer high-efficacy treatments and fertility, along with the potential for relapse during pregnancy, are still areas where we lack a lot of evidence,” Professor Lechner-Scott said.

Benefits of Pregnancy on MS

On the other hand, there is a growing body of evidence suggesting that pregnancy may have beneficial health outcomes for women with MS, including delayed onset and less severe long-term disability.

A new study aims to figure out how biological mechanisms underlying pregnancy can lead to improved MS outcomes.

“We want to identify the novel molecular biomarkers and mechanisms by which pregnancy impacts women’s health and MS disability outcomes, by looking at changes to blood-based biomarkers before, during, and after pregnancy,” said Professor Lechner-Scott.

It is hoped we will find out how immune system changes in pregnancy might protect against long-term disease progression in women with MS and other demyelinating disorders.

The results may also help reveal the biological processes behind the onset and progression of MS or other demyelinating disorders and assist in the development of new treatments.

How Healthy Women Can Help This World MS Day

You can contribute by getting involved in the study as part of the healthy control group, which needs around 20 volunteers by the end of the year. Participants will be asked to complete short surveys and provide blood samples at key points before, during, and after pregnancy.

“Not only will you be contributing to this groundbreaking research, but you could make the life of a woman with MS easier by helping to provide a more complete picture of the effects of pregnancy on their long-term outlook,” said Professor Lechner-Scott.

The study is open to women with no neuroimmunological conditions, aged 18 and over, who have never been pregnant (including miscarriages or terminations), and are either planning to try for a baby in the next 12 months or are in their first trimester. Participants must also be eligible for Medicare.