Many wonder how the disease and its treatment will affect them during pregnancy and child-rearing years
Lizelle Mendoza didn’t think she would ever be able to have a baby.
The 30-year-old nursing student from Winnipeg says that as a woman with multiple sclerosis (MS), she was always led to believe that women with her disease couldn’t, or shouldn’t, get pregnant.
“I just remember talking to my neurologist [years ago], saying, ‘I really want to start a family,’ and he would always just brush it off and say, ‘You don’t need to think about that right now,’ or ‘I don’t know if it’s possible because of where you’re at right now with your diagnosis,’” Lizelle says. “So I thought, I guess it’s never possible that I’m going to have a child.”
The period leading up to Lizelle’s MS diagnosis was a challenging one. She experienced symptoms starting when she was 12 years old, including problems with vision and walking. But she was not officially diagnosed with MS, classified as an autoimmune disease of the central nervous system, until the age of 18. And while a subsequent drug regimen kept her symptoms largely under control, Lizelle had difficulty coming to terms with her condition and kept it from her circle of friends for several years.
“From age 18 to 20, I feel like that was the lowest time of my life, because there was so much happening within my body that I didn’t understand,” she says.
Telling her friends about her MS at age 20 was freeing for Lizelle. Their support, as well as her own acceptance of her disease, benefitted both her physical and mental health. She began volunteering for the Multiple Sclerosis Society of Canada, helping to form a young-adult support group she’s still involved with.
But when she and her partner, Rad, began discussing becoming parents, getting pregnant was still a question mark. Lizelle’s periods had always been irregular (a common side effect of her medication). And because she doubted she could get pregnant, she thought her first signs of pregnancy – fatigue and stomach pains – were an MS relapse.
Lizelle received a welcome surprise from her family doctor this past November, right before completing an exam for her nursing program at Assiniboine Community College.
“She said, ‘I wanted to let you know your bloodwork is back and it’s normal, but there’s one little thing. You’re actually pregnant.’ I was like, ‘What? No way. Can I call you back after my exam?’” Lizelle remembers with a laugh.
Now, Lizelle is seven months pregnant with her first child. She chose to discontinue her MS medication throughout her pregnancy and her condition has remained stable. Still, she has questions about how having MS will affect her baby and herself before, during and after the baby comes.
“My doctor said to take it one step at a time,” she says.
Questions and concerns like Lizelle’s are common for women living with MS, says Pamela Valentine, president and chief executive officer of the MS Society of Canada. Women are three times more likely to be diagnosed with MS, and diagnosis often occurs during their child-bearing years.
Because there is so much variability in how the disease expresses itself, Dr. Valentine says, it can cause anxiety for women when it comes to pregnancy and child-rearing.
“One of the challenges for women as they face their child-bearing years with a disease that’s so unpredictable, they have a lot of fear about becoming a mom – having to potentially come off their drug therapies, which they worry will exacerbate the disease,” she says. “So there’s a lot of anguish I hear from women wondering, ‘What is this disease going to mean for me and my children?’”
Although there is still research to be done in the area of MS and women’s health, some things are already known. For example, certain drugs taken to manage MS can cause irregular menstrual cycles or lessen the effectiveness of contraception. Some drugs may carry higher risks to women who are pregnant or breastfeeding because of potential harm to the developing fetus or baby. Some women can experience MS relapses post-partum. And later in life, some women report that symptoms of menopause can make MS symptoms feel worse.
Dr. Valentine says the best way for women living with MS to deal with these concerns is to talk with their health-care providers about any risks they may be facing. She’s hopeful that continued research in the area of MS and women’s health will help women thrive throughout all stages of their lives.
“Being diagnosed today has a very different trajectory for people than being diagnosed, say, 30 or 40 years ago,” she says. “And I really think in the next 20 years, there are going to be even better treatments available. Certainly, we’re going to know a lot more about how to manage the disease from a lifestyle and wellness perspective.”
Sensible lifestyle choices have always been a part of how Julie Jean copes with having MS. Diagnosed at the age of 35 after experiencing numbness in her extremities, the 40-year-old Quebec City resident has managed her MS through a three-times-a-week drug regimen, regular exercise and a balanced diet.
Julie says she wants to let people know that MS can be invisible.
“People with MS often appear disease-free, even when they can have many symptoms that prevent them from functioning normally,” she says. “Fatigue and cognitive disorders, in particular, are often very difficult symptoms that can lead people with MS to be far less productive at work.”
Julie shares a connection to MS through both her life and her work. She has been the pharmacist-owner of a Pharmaprix (part of the Shoppers Drug Mart chain) in Quebec City for more than a decade. Shoppers Drug Mart is a partner in the fight to end MS, supporting the MS Society of Canada through its SHOPPERS LOVE. YOU. campaign promoting women’s health.
“The purpose of the SHOPPERS LOVE. YOU. campaign is for women to understand that it is important for them to look after themselves,” Julie says. “Women are often the family pillars so, when women look after themselves and are doing well, the whole family and significant others will benefit.”
Through its SHOPPERS LOVE. YOU. initiative, Shoppers Drug Mart made a commitment to positively impact women’s health and MS, by helping the MS Society update and create new online resources and raise awareness of topics related to women’s health.
Julie herself has helped raised money for the MS Society, climbing Mount Kilimanjaro in January, 2018, and raising over $20,000. She says Shoppers’ support of the MS Society has special meaning for her.
“As a result of all those who fight to end MS, including Shoppers, I have hope for my future and for the future of everyone who, like me, lives with this disease.”
It’s a hope that Lizelle shares. She will graduate in May with her practical-nursing diploma and she and Rad are excited to welcome their new baby this summer. She has a message for others like her who live with MS.
“Anything is possible. Don’t give up,” she says. “Just follow your heart and if it’s something that you really want, then it’s something that’s possible.”
Advertising feature produced by Globe Content Studio. The Globe’s editorial department was not involved.