Keisha Jordan has always been creative. She started out drawing at a young age and later broke into an art advertising career, working with big brands like Coca Cola and Jordan. She has also hosted art shows and works with interior designers to create beautiful and culturally inspired textiles.
“I like to make something from nothing,” Jordan said, who is originally from Chicago and moved to Kansas City almost a year ago for her current position as associative creative director at Barkley. “You start with a blank canvas and you just use your imagination, not only to create something beautiful, but hopefully to impact or to create some kind of change and awareness to people. That in itself creates a level of connectivity.”
Jordan is using her creativity to create a documentary to spread awareness about her and four other Kansas City women’s experience having lupus, a chronic, lifelong autoimmune disease that is two to three times more likely to affect Black and Latino women. More than 90% of the people who develop lupus are women.
"Because of systemic racism in regards to medical care for minorities, I believed is the reason why the lupus community and the overall awareness of Lupus are ignored," Jordan said. “Somebody needs to say something about it.”
Jordan hopes her documentary helps people learn more about the mysterious disease.
“It's one of those diseases that is unheard of or people are unsure about it -- it's almost like they're afraid of it,” Jordan said. “The people that are affected, we are real people. At the end of the day, lupus is not a death sentence. People are still living normal, healthy lives.”
What is Lupus?
When someone has lupus, their immune system attacks healthy tissue and organs, instead of fighting off germs like it’s supposed to. That can cause pain, inflammation and tissue damage to organs.
Lupus is a complex disease with no cure and requires treatment by a rheumatologist, a doctor who is an expert in treating lupus and other conditions causing chronic, often intermittent pain affecting the joints or connective tissue. Lupus can be hard to detect because it has many symptoms that can come on slowly. People with lupus also often have symptoms that are not specific to lupus including, fever, fatigue, weight loss, hair loss and stomach pain.
Typically, a rheumatologist will diagnose someone with lupus if they have at least four of these symptoms: a butterfly-shaped rash over the cheeks, mouth sores, arthritis, lung or heart inflammation, kidney problems, seizures, strokes or low white blood cell counts. The rheumatologist will then conduct a series of blood tests to confirm the diagnosis.
While there is no cure for lupus, most people with lupus live normal lives. Treatment of lupus has improved, and people with the disease are living longer, but it is still a chronic disease that can limit activities and even lead to death if not treated properly.
Lupus patients’ quality of life can suffer because of symptoms like fatigue and joint pain. These problems can lead to depression, anger, loss of hope or loss of the will to keep fighting.
Most often, lupus starts in people in their 20s, which is when Jordan was diagnosed.
Before her diagnosis, she felt more tired and achy than usual, then her symptoms grew worse to the point where she couldn’t walk, eat or think. She felt her body growing weaker and weaker.
Lupus is known as the invisible disease because many of the symptoms are not immediately visible to others. In addition, there is a lack of education and knowledge about it, leaving many with lupus feeling misunderstood.
“Early on, I didn’t have too much of a social life or dating life with the rashes, hair falling out and swelling up. That's kind of hard to take, especially in my early 20s,” Jordan said.
Because she was in her 20s and in college, she still wanted to fit in, but it was hard for her to tell people that she was sick. Many times, she would try to mask her symptoms.
“I felt like I had to have a social life and it got to a point where I couldn't keep up. And I was too embarrassed to tell my friends what was going on,” she said.
Amy Ondr, president and CEO of the Lupus Foundation of America Heartland Chapter, which covers Missouri, Kansas and southern Illinois, said young women who are diagnosed in their early 20s is a critical time for them to be receiving the support they need because of all the misconceptions out there about lupus.
The Lupus Foundation of America Heartland chapter raises funds to support research to find the cause and cure of lupus. They also provide educational programs, so that those with lupus understand their disease and learn how to better manage it. The organization provides support groups and programs for those with lupus to meet and learn from each other.
“We hear all the time that people with lupus don't look sick, but that doesn't mean they're not sick. What’s going on inside of them isn't always reflected on the outside,” Ondr said. “Oftentimes you will see people with other diseases that you can clearly tell they are being affected by something, but people with lupus, it's very frustrating for them.”
About six years ago, Jordan started to become more comfortable telling people about lupus after she met members of the Chicago chapter of the Lupus Foundation of America and started volunteering and raising funds through her organization Ultraviolet Warriors to help support the annual "Walk to End Lupus Now."
“Being a part of that finally made me even feel more comfortable with my diagnosis and telling people about it, but also, it provided me some education awareness that I didn't even know about,” Jordan said. “I felt like I could help make a difference to other people in the community.”
Wolves and Butterflies
Now that Jordan is at a point where she feels her lupus is pretty much stabilized and she’s seeing her doctor regularly, she has been focusing on her independent documentary, "The Wolves + Butterflies Lupus Diaries."
The disease name ‘lupus,’ Latin for wolf, is attributed to a thirteenth century physician who used it to describe lupus facial lesions that were reminiscent of a wolf's bite. The lupus community also uses the butterfly as a unifying symbol, which comes from the rash resembling a butterfly that many lupus patients develop.
The documentary highlights her own story with lupus and other women’s journey with lupus from their diagnosis to how they’re living with it now.
"I want those that are living with lupus to feel comfortable and feel empowered to share their stories because as a community a lot of people have gone silent, and have been ignored or forgotten," Jordan said. "I was one of those people for a long time, so I just want people to feel inspired and also more informed about lupus in this documentary."
Jordan is planning a watch party for the documentary in the next few weeks and plans to put the documentary on Youtube.
She hopes to eventually add more stories from those who are indirectly impacted by lupus like caretakers, spouses and children to the documentary.
“I just hope that the documentary touches people in a way that had never been touched before,” she said. “I feel like now is the time to start talking about this.”
Learn more about the Lupus Foundation of America here: https://www.lupus.org/heartland/about-this-chapter.
Learn more about the signs and symptoms of lupus here: https://befiercetakecontrol.org/whatslupus.
Visit Jordan’s website here: http://www.keishajordan.com/.