Women living with multiple sclerosis (MS) face a set of physical challenges distinct from their male counterparts.
Family planning, pregnancy and breastfeeding, bladder and sexual dysfunction, and menopause can be complicated by MS and its treatments. What's more, young women who are working and/or raising families often have trouble balancing MS care and primary and gynecologic care.
Enter the Age-Span Women's MS Program: a new offering under the umbrella of Penn Medicine's MS Center.
"We need to spend so much time discussing medications with our patients that sometimes we don't get to focus on their other health concerns," says Dina Jacobs, MD, Associate Director of Penn's MS Center, who heads up this new program. "It's equally important to consider physical activity, nutritional needs, psychosocial health, and the overall health and wellness of our patients."
In 2018, Dr. Jacobs and Amit Bar-Or, MD, FRCPC, Chief of the Multiple Sclerosis Division, received a grant from the Penn Board of Women Visitors to kickstart the Women's MS Program. Today, it has grown to offer:
- Joint efforts with CHOP colleagues Brenda Banwell, MD, FRCPC, Chief of the Division of Neurology and Sona Narula, MD, to make it a unique age-span program
- Continuing medical education for clinicians
- Patient counseling, education, and support groups
- Support for adolescents transitioning from CHOP to the Hospital of the University of Pennsylvania
- Outreach to collaborative treating clinicians in neuroscience, primary care, women's health, endocrinology, and related services to provide comprehensive care for women living with MS
Personalized Care for Unique Challenges
One consideration for women with MS is family planning. "Pregnancy is an issue that providers may not feel comfortable addressing with their MS patients," Dr. Jacobs explains. "They may want to refer them for consultations with us. We know that pregnancy is relatively protective in terms of relapses, but there are still a lot of questions that we must address."
For instance: is it possible for women with MS to have children? Absolutely, Dr. Jacobs says. However, a personalized approach is necessary to optimize care. "Some MS medications cannot be used immediately before or during pregnancy. We use an individualized approach that considers the individual, her level of MS activity, and other factors in the year before pregnancy."
A related disorder, neuromyelitis optica (NMO), can worsen during pregnancy. "Our program includes a specialist in this disorder, Rachel Brandstadter, MD. This level of specialty care is needed in this region because it's not offered at most institutions."
Menopause is another point to consider, Dr. Jacobs notes. "Elevation in body temperature can worsen MS symptoms because it affects how efficiently nerves work. Old symptoms such as blurred vision may transiently worsen during the hot flashes associated with menopause. These issues haven't been discussed widely to date."
Continuing Medical Education (CME) is a core component of the Age-Span Women's MS Program. In early May, Dr. Jacobs and colleagues from across Penn Medicine hosted their second annual symposium on women's issues in neurology and MS.
The accredited symposium was aimed at a broad range of clinicians — from neurologists, endocrinologists, internists and obstetrician/gynecologists to nurses, physical and occupational therapists, pharmacists, social workers, and mental health professionals.
"It's grown into an all-day conference devoted to MS and a number of other subspecialties in neurology," Dr. Jacobs says. "By hosting the symposium virtually this year, we were able to open it up nationally and internationally."
Patients Supporting Patients
From day one, patient education and support have been central to the new program. Nurses, physicians, pharmacists, and other clinicians lead these small groups and discuss a variety of topics.
"The monthly support groups have been a great forum for our patients," Dr. Jacobs says. "We've covered different MS treatments, exercise, mindfulness, employment, psychosocial issues and more."
Dr. Jacobs and her colleagues knew their patients would appreciate the groups but were surprised to see how passionate they became. Participants began networking, forming mentorship bonds and launching peer-led support groups — some of which last longer than expected.
"We've had peer-led meetings last until 9 pm," Dr. Jacobs says with a smile. "When these women see someone with the same diagnosis and the same health concerns, they find role models. They learn they can get through it, too."
When the COVID-19 pandemic threatened to interrupt these much-needed support groups, social worker Nora Garland, MSW, LSW, and nurse navigator Vanessa Zimmerman, MSN, RN, MSCN worked quickly to lead a mindfulness group over Zoom.
"Our patients are incredibly resilient, and I learn so much from them," Dr. Jacobs says. "They have to face uncertainty, but they rise to the challenge and develop courage and strength that I truly admire. They inspire me every single day."