Why I fight to help those with the invisible disability of Lupus (Letter)
May is Lupus Awareness Month. Lupus is a chronic, complex often debilitating autoimmune disease where your body attacks its healthy cells and tissues. Lupus commonly affects women more than men between the ages of 14 and 45. Symptoms include anemia, joint pain, fatigue and more. You will find it differs from person to person. In honor of the people who have lupus, you will see a purple light in front of 205 Claremont Ave. the Montclair municipal building, nightly. The Township Council passed a proclamation and resolution to recognize May as Lupus Awareness Month in Montclair after a conversation with then-Fourth Ward Councilwoman Dr. Renee Baskerville and present Councilman David Cummings.
About 1.5 million Americans and 5 million people worldwide suffer from Lupus. Often, they don't look sick. Statistically, lupus affects more people of color, such as people of African, Native American, Asian and Latino descent. I was diagnosed at 16, but my symptoms started at 14 years old. I went from being an active teenager, participating in sports, beauty pageants and dancing, until I experienced difficulty walking. After my diagnosis, my journey with lupus turned into advocacy. I looked like the picture of health, which made it difficult for people to understand I was sick.
In college, I was tired of the name-calling, from people saying I was being antisocial. It motivated me to organize Montclair State University students to fundraise and walk for the Lupus Foundation for America’s New Jersey chapter. The awareness gained recognition in The Herald News and The Record detailing my fight against lupus. My journey with lupus has been difficult, but I managed to graduate from Montclair State University with a degree in biology and a double minor in health studies and classics. I wanted to be a biomedical scientist because of my illness, so I continued my education at the University of Medicine and Dentistry of New Jersey, and graduated with a master's degree in biomedical science with a concentration in pharmacology.
I have been recognized as an avid volunteer for both the Lupus Foundation of America and the Lupus Research Alliance as a lobbyist, committee member, multicultural task force member and speaker. On World Lupus Day, Monday, May 10, I was featured on the Lifetime TV show “The Balancing Act,” hosted by Montel Williams, to share my journey with lupus nephritis; the video is available on YouTube. My ailment inspired me to be an advocate for invisible disabilities. As lupus is a form a disability, equal rights for lupus patients is essential. During the pandemic's peak, the disabled were forgotten, so I drew attention to it. I contacted Whole Foods to suggest an amendment to its senior hours to accommodate those with underlying conditions and invisible disabilities. This led to a change in their policy across America. You can find the article on The Patch. My advocacy is global; I founded Butterfly Walkers, Inc. a 501(c)(3) nonprofit organization dedicated to raising lupus awareness in 2011. As a native of Ghana in 2012, during my visit there I founded Alliance of Hope for Lupus, which is a sub-organization of Butterfly Walkers, Inc. in efforts to educate Ghanaians.
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