By Megan Sayles
AFRO Staff Writer
msayles@afro.com
A few years ago, four women with multiple sclerosis (MS) met as part of a sorority for women with chronic illnesses. It turned out their entire 13-member line also had the autoimmune disease. The four women eventually left the sorority for different reasons, but they still yearned for a space where they could forge bonds with other women who could relate to their lived experiences.
Instead of searching for a new community, they created their own. Founded by Lekeia Conway, Angie Spence, Tiffany English and Jessica Michelle Hawk in 2021, Alpha Eta Phi is the first and only non-collegiate sorority dedicated to women with multiple sclerosis. The organization aims to reframe what it means to navigate life alongside the condition—promoting strength, perseverance and sisterhood.
“We wanted it to be a safe space and a supportive environment. We didn’t want women to feel that life stops just because they have MS because it doesn’t stop,” said Conway. “You can still go on, live your life and do the things you enjoy and want to do. You just may have some limitations.”
Alpha Eta Phi was also designed to raise awareness about multiple sclerosis to the broader public, especially for Black women who often go underdiagnosed. A 2020 study in the International Journal of MS Care revealed that African-American women’ s diagnoses were delayed because physicians initially attributed their symptoms to conditions more commonly associated with Black patients, such as lupus or sickle cell disease.
Through their advocacy, the women are also striving to reduce the share of Black women who go under- and misdiagnosed.
“We are a sorority, but on the other side of that, we still have MS. It’s important, especially for our community, because it’s starting to hit us more,” said Spence. “A lot of people don’t even know they’re walking around and don’t know they have it.”
Both Conway and Spence said they had limited knowledge of multiple sclerosis when they were diagnosed.
Spence was diagnosed in 2019, having only known of the disease through a few celebrities. Her symptoms began with vertigo that intensified quickly, leaving her unable to sleep on her right side without nausea.
Her first trip to the emergency room only resulted in anti-nausea medication, and several specialists failed to identify the problem. A friend eventually suggested she see a neurologist. While waiting for the appointment, her symptoms escalated to slurred speech, shaking and balance problems. An MRI ultimately confirmed she had multiple sclerosis.
Conway said she experienced symptoms long before her diagnosis in 2011. As a college senior, she noticed leg pains and balance issues but brushed them off. After graduation, her symptoms worsened, culminating in vision loss in her right eye. At the emergency room, doctors diagnosed her with optic neuritis, a condition linked to multiple sclerosis. She spent a week in the hospital, underwent 10 spinal taps and later saw an optic neurologist who identified lesions on her brain and spine—telltale signs of multiple sclerosis.
“When you hear something like that, you automatically think: am I going to die? I felt an enormous amount of pressure,” said Conway. “I didn’t even have time to do the research or think about it, it was just pushed in my face.”
With Alpha Eta Phi, both Conway and Spence hope they can ease the challenges of navigating not only the health care system but also daily life. The sorority also makes a point to host programming that goes beyond multiple sclerosis. Its members have participated in cooking classes, information sessions on Social Security, entrepreneurship workshops, book clubs, make-up tutorials and karaoke nights.
As the sorority continues to grow, the founders are focused on fortifying its foundation and operations so that it can exist well into the future.
“We want to build this organization up to the point that when we’re gone, it’s still going and doing what we intended for it to do—that is to advocate and educate people about multiple sclerosis,” said Spence. “Hopefully by then, they’ve found a cure for it.”
