According to the latest research from Lupus Foundation, nearly 1.5 million Americans are diagnosed with lupus. The disease is most prevalent being developed by women especially those of color. However, despite the number of diagnoses, the illness remains a silent discussion amongst individuals.
LaDonna Sneed, a 30-year-old single mother of one, said that she gets excited when she sees lupus commercials because it drives a conversation and people are hopefully talking about it afterwards.
Sneed, who was diagnosed with lupus 11 years ago, said, “I used to get so aggravated when people would ask if they can catch it.”
Now she will tell 30 people about her disease and maybe 10 would ask her what it is, but prior to the 30 would have asked, she said.
“Lupus is a chronic, autoimmune disease that can damage any part of the body,” according to Lupus Foundation.
There is a lack of lupus education because for the most part it isn’t physically detectable. Keke Grady explained the false impressions of the disease are due to the lack of awareness and education amongst the public.
Grady said, “Some common misconceptions I’ve encountered are that it isn’t a serious condition, lupus is like cancer, lupus is contagious, and lupus is rare. It makes it even more difficult because the disease is so often invisible to others.”
“I’m sure no one passes me on the street and thinks she has a life threatening condition, takes 15 pills a day to manage it, and gives herself a shot weekly,” she said. Durham, N.C. native Grady was diagnosed with lupus 13 years ago at the age of 19.
The face of lupus
Both Sneed and Grady are women of color who represent a large portion of the population living with lupus. In fact, according to the Lupus Foundation, “Women of color are two to three times more likely to develop lupus than Caucasians.”
Neither of them had any prior knowledge of lupus before being diagnosed because no members of their families had it. They experienced extreme fatigue, headaches, joint pain and other symptoms, but no idea what it was until several tests were completed.
Sneed recalled her doctor giving her a pamphlet about the disease and prescribed her with 11 different medications, but never directly explaining to her that she had lupus. However, after reading the pamphlet, she thought her life was over and became depressed. Whereas, Grady without prior knowledge of the disease either didn’t think about the severity of the disease because she’s had tumors removed at the age of 2 and blood vessel issues, therefore, she figured it could go away.
“After two blood transfusions, biopsies, extensive testing, dietary changes, intense prescription drug regimens including high doses of steroids, and 19 months of chemotherapy, I had no choice, but to accept my diagnosis,” Grady said.
A reason to live
Sneed and Grady found different avenues to keep going and share information with people about the disease.
Sneed received it in the birth of her daughter. She was told by her doctor that there was a slim chance of her having children and if she became pregnant, the risk of miscarriage or premature delivery was high. However, in 2010, the Augusta, G.A. resident Sneed found out that she was pregnant with her daughter.
“My pregnancy was the best time of my life,” she said. She was only taking one medicine and blood thinners. The doctors did not think her child would make it due to Sneed’s lupus, but she did. Born prematurely, Rylee entered the world. Now 3-years-old, she keeps her going and is her reason for living. She realized that the disease did not determine her future.
“I have lupus. Lupus doesn’t have me,” she said.
Grady along with her friend Adia Mosely co-founded a non-profit organization in 2007 called Gateway Charities, Inc. “to increase awareness and provide direct support and financial assistance to patients with lupus”, she said.
The Maryland resident explained that while visiting her doctor, she met people who traveled states to see the specialist. The average cost is nearly $20,000 a year which does not include family and travel expenses and loss of work if bedridden or hospitalized, she shared. Therefore, she developed a unique way to impact the lives of those diagnosed with lupus through Gateway Charities, Inc.
Grady said it is important for the community to educate themselves about the disease.
“If you know someone with lupus, encourage them to become active in organizations and programs in their communities for those with lupus,” she said.