Two months after 39-year-old Joanna Bramer of Newfields gave birth to her second child, a beautiful baby girl, she started to get headaches. Soon, her vision got blurry. A week later, everything went dark.
Joanna’s husband, Dan, rushed her to Portsmouth Regional Hospital (PRH) on a Sunday in March. She underwent numerous blood tests and diagnostic imaging, including a CT scan, MRI, an antibody test, and a painful but critical lumbar puncture. By Monday, doctors had a sense of what they were dealing with: A rare condition that affects just 3 in 1 million people in the US each year.
MOGAD, or myelin oligodendrocyte glycoprotein antibody disease, is a disorder of the central nervous system that causes inflammation and potential damage in the optic nerve, spinal cord, brain and brainstem.
“No one could be sure if the pregnancy triggered something in me due to a lowered immune system, or if it was completely unrelated,” Joanna said. “It moved so quickly from the headaches to blurred vision to barely seeing shadows. It was terrifying.”
The hospitalist team, including Omar Tayeh, MD, and two residents, Catherine Buell, MD, and Leah Serunjogi, MD, worked quickly to diagnose Joanna to determine the best course of treatment. Yet, one of the most important parts of medicine is knowing what you don’t know. After consulting with neurologist Anjali Bose, MD, the team contacted multiple Boston hospitals experienced with MOGAD due to its rarity, complexity and severity. By Tuesday night, she was transported to a facility in Boston with a clinic dedicated to the treatment of neuroimmune diseases, including MOGAD.
“This was a first for me here at Portsmouth Regional Hospital,” Dr. Tayeh said. “I had never seen a case of MOGAD, which isn’t surprising considering how rare it is. But we knew right away that this was something very serious, and we did everything in our power to get Joanna the care she needed quickly.”
MOGAD is so rare that neither PRH nor the facility in Boston could quickly or accurately test her spinal tap fluid, which had to be sent to Mayo Clinic for confirmation of her diagnosis. Just last year Mayo Clinic developed a test to differentiate it from Multiple Sclerosis.
If left untreated, MOGAD can cause permanent blindness, paralysis, long-term bowel or bladder issues or trouble with language, memory and thinking, according to Mayo Clinic.
“I wanted to stay here at Portsmouth Regional Hospital, close to home, close to my husband and our two children,” Joanna said of 6-year-old Declan and now eight-month-old Madelyn. “But we knew that this was serious, and trusted the doctors to do the right thing. Soon I was off to Boston, and it wasn’t long before they started me on a five-day course of high-dose steroids.”
During treatment in Boston, Joanna’s husband kept the PRH team apprised of each milestone throughout her treatment, with texts noting when she could see shadows, colors and faces.
“I’m so grateful for the care I received here, from those who worked so hard to figure out what was wrong with me, to the wonderful nurses on the maternity floor,” Joanna said. “I was just two months out from giving birth to my daughter. Not only could I not physically see her or my husband, but I couldn’t see what I was doing in order to pump breast milk to feed her. That level of vulnerability is nearly as terrifying as having lost my vision, and those nurses were so wonderful and caring. I don’t know what I would have done without them.”
After the high-dose steroids, Joanna was prescribed another steroid for a couple of months. She was able to resume driving in May after completing therapy and a driving assessment.
“One of the things my doctor in Boston told me once things started getting back to normal, was how grateful I should be to the team at Portsmouth (Regional Hospital),” Joanna said. “He emphasized that they did everything right and that I had been in great hands with them.”
Today, her vision is 20/20 and Joanna’s family is carving out a new normal with treatments, tests and appointments to monitor the disease. MOGAD has a 50 percent chance of relapse.
Declan is now in first grade and Madelyn is enrolled in daycare. But just before school started, they wanted to come back to PRH as a family.
“I wanted to be sure I could thank everyone,” Joanna said. “And I wanted to see them all with my own eyes.”
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