During her senior year of high school, Ebony Capers’ headaches were so intense she could not concentrate. She knew the pain she felt was not normal, yet at that time, she was uninsured. Instead of seeing a specialist, Ebony and her mother went to a local public emergency room looking for answers.
“Some people are just born with white spots on their brain,” she recalls a provider casually telling her as he read the results of her CT scan. His statement became the first prominent memory shaping Ebony’s health journey.
Those 11 words foreshadowed a complex road ahead for Ebony. Between the constant battles with fatigue, numerous doctor appointments, and several unsuccessful treatment plans—Ebony’s path to her college graduation grew further away due to her misdiagnosis. Her experiences proved to be traumatic, taking a toll on her physical and mental health.
Nearly six years after that first hospital visit, Ebony finally received a definitive diagnosis: Multiple Sclerosis (RRMS).
Now in her thirties and nearly a decade after receiving her diagnosis, Ebony is still meeting and overcoming hurdles. On more than one occasion, her experience with MS has been questioned. Often, symptoms of MS can be invisible. This reality creates ongoing challenges for MS warriors like Ebony, who live with less visible signs of the disease.
What is Multiple Sclerosis?MS is a chronic disease of the central nervous system. It occurs when the immune system attacks the brain and spine, causing damage that disrupts signals to and from the brain.
The words “multiple sclerosis” translate to “multiple scars.” Every time someone with MS experiences an interruption of communication signals in their central nervous system, they may experience symptoms such as numbness, tingling, mood changes, memory problems, pain, fatigue, blindness and/or paralysis. Everyone’s experience with MS is different and these losses may be temporary or long lasting.
Even after symptoms begin to subside, scar tissue may be building up, and, over time, the patient may never regain the functionality they lost.
Ebony was diagnosed with relapsing-remitting MS (RMS), the most common form of the disease. RRMS presents as episodes of new or worsening signs or symptoms (relapses), followed by periods of recovery. Without treatment MS relapses may continue and can transition to a progressive form that worsens over time.
MS in Black CommunitiesHistorically, MS was believed to primarily affect people of European descent. However, recent research indicates the incidence of MS is higher in Black people than previously thought.
Although there are several differences in how MS may present among people who identify as Black or of African descent compared with people of other races, we don’t yet know why. However, we do know that Black people are vastly underrepresented in the clinical trials. According to the U.S. Food and Drug Administration (FDA), Black people make up only 5% of those enrolled in clinical trials.
Inequity in the healthcare system has widened with the COVID-19 pandemic, bringing attention to the low participation among Black Americans in clinical trials, among other things. Historically, inhumane treatment of Black people to advance medical research, along with racism and bias in the healthcare system, have contributed to well-reasoned mistrust and lower participation in clinical trials. In recent years, federal guidelines have been established to protect clinical research volunteers from harm, and there is a concerted effort across the healthcare system to reckon with hundreds of years of harm by centering the voice’s of Black people and other historically marginalized groups to reduce inequities and improve health outcomes for all.
Ariel Antezana, M.D., director of the NeuroMedical Clinic of Central Louisiana MS Center, believes that awareness of MS is generally increasing, but, in his experience, for many people of color — particularly Black, Hispanic and Latinx people — there simply isn’t enough knowledge of MS. That is despite the fact that Black people with MS might have a more aggressive disease progression, greater disability and different symptoms, including greater walking, balance and coordination problems, more cognitive and visual symptoms, more frequent relapses with poorer recovery, and earlier onset of disability.
A Treatment Option for MSEbony is currently participating in a clinical trial being conducted by Genentech, a California-based biotechnology company, that focuses exclusively on broadening the healthcare industry’s current understanding of MS among people who identify as Black or of African descent and people in the Hispanic communities. The goal ofthis research is to build a more robust set of data on the MS medicine called Ocrevus® (ocrelizumab), which Ebony has been prescribed for the past year.
Ocrevus was approved by the FDA five years ago in 2017 and is an antibody designed to selectively target a specific type of immune cell known as B cells, which are thought to be a key contributor to the nerve cell damage that can cause physical disability and cognitive issues. More than 225,000 people globally have been treated with Ocrevus, which is administered through an IV infusion twice a year. The first dose of Ocrevus is split between two treatments, for a total of three treatments in the first year.
Supporting Black Women with MSSince her diagnosis, Ebony has become an advocate for women of color with MS. Nearly six years ago, she started a private Facebook group called “Women Of Color with Multiple Sclerosis” with four other willing and interested ‘sisters’—a term she affectionately uses to refer to the women who join her group. To date, the group has more than 3,000 members. Ebony specifically designed it to be a safe space for minority women affected by the disease.
Ebony has been active in this community throughout her treatment with Ocrevus by coordinating regular virtual and in-person events for the women in the group. MS is known to be a very lonely disease; through the platform, she hopes to help the women in the community build lifelong bonds as an extended form of support. When she is not engaged with her MS sisters, she enjoys cooking and works as a nanny for families in need.
If you have recently been diagnosed with MS or have a friend or family member who has recently been diagnosed, keep in mind these words of wisdom from Ebony:
Give yourself grace. MS is unpredictable. With that unpredictability, be sure to save some grace for yourself. Some days will be good; relish those days. However, some days will be bad—don’t beat yourself up if you need help.
Keep living. Be encouraged and keep living. Life is going to be a little bit different, but it’s still going to be life, and this is the only one you get.
“In working with my fellow sisters, I cannot emphasize enough the importance of being proactive about your health and not be afraid to ask your doctor questions to help get the best care you need. I believe if we educate more people about MS, we can encourage them to seek the right care earlier and ultimately see better outcomes,” concluded Ebony Capers.
You can become involved with the MS community by joining an advocacy group, including the National Multiple Sclerosis Society, Multiple Sclerosis Foundation and Can Do MS.
For more information about Ocrevus as an MS treatment option, please visit www.Ocrevus.com.
Indications & Important Safety Information
What is OCREVUS?OCREVUS is a prescription medicine used to treat:● Relapsing forms of multiple sclerosis (MS), to include clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease, in adults● Primary progressive MS, in adults.It is not known if OCREVUS is safe and effective in children.Who should not receive OCREVUS?Do not receive OCREVUS if you have an active hepatitis B virus (HBV) infection.Do not receive OCREVUS if you have had a life-threatening allergic reaction to OCREVUS. Tell your healthcare provider if you have had an allergic reaction to OCREVUS or any of its ingredients in the past.What is the most important information I should know about OCREVUS?OCREVUS can cause serious side effects, including:● Infusion reactions: Infusion reactions are a common side effect of OCREVUS, which can be serious and may require you to be hospitalized. You will be monitored during your infusion and for at least 1 hour after each infusion of OCREVUS for signs and symptoms of an infusion reaction.● Infection: OCREVUS increases your risk of getting upper respiratory tract infections, lower respiratory tract infections, skin infections, and herpes infections. Infections are a common side effect, which can be serious. Tell your healthcare provider right away if you have an infection. Your healthcare provider should delay your treatment with OCREVUS until your infection is gone.● Decreased immunoglobulins: OCREVUS may cause a decrease in some types of immunoglobulins. Your healthcare provider will do blood tests to check your blood immunoglobulin levels.What are the possible side effects of OCREVUS?OCREVUS may cause serious side effects, including:● Risk of cancers (malignancies) including breast cancer. Follow your healthcare provider’s instructions about standard screening guidelines for breast cancer.These are not all the possible side effects of OCREVUS.Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.For more information, go to www.OCREVUS.com or call 1-844-627-3887.For additional safety information, please see the full Prescribing Information and Medication Guide.
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