Nikkia’s Story: Fight On



In 2007, Nikkia was experiencing joint pain, fatigue, blue fingers, and lethargy while working as a bank teller. She would visit doctors’ offices and the emergency room (ER), and medical professionals could not give her a diagnosis. She was told that perhaps she was catching a cold or a virus. Nikkia felt like she was going crazy- that maybe nothing was wrong and she was imagining things.

Nikkia started thinking that perhaps her symptoms could be attributed to all the stress in her life from her breakup and eviction. Nikkia was facing many difficulties and even had to live in a motel room for a while. Nikkia started feeling shortness of breath so she immediately quit smoking. Then, she started getting really sick; she couldn’t even get out of bed or shower, and her shortness of breath persisted. As Nikkia felt that her health was at its weakest point, she visited the hospital with her family in tow. She was finally diagnosed with lupus, pericarditis, and lupus nephritis.

Nikkia went to the ER 8 times during a span of 6 months before receiving her diagnosis. After diagnosis, she had to endure chemotherapy. She has experienced 3 terrible lupus flares. During her second flare, Nikkia had cerebritis and encephalitis which caused her to have seizures. She couldn’t talk for 6-8 month because of the tracheostomy .

When Nikkia was diagnosed with lupus, she didn’t know much about the condition and neither did anyone in her family. She was determined to learn as much as she could about lupus and the associated medical terminology. She joined support groups, and realized that there were others suffering even more than she was. Seeing others going through so much pain and dealing with it head on was motivating for Nikkia. She learned to speak to doctors confidently and learned her flare triggers. Nikkia knows how to manage her health and battles lupus with her family by her side. Her mother, sister, and young daughter are her support pillars and they keep her strong. Now, Nikkia has been in lupus remission since 2021!

Nikkia hopes for more awareness for conditions like lupus and better resources for caregivers. She is an advocate for lupus resources which is why she often attends conferences. It was at a patient conference that Nikkia first learned about Sanguine. Nikkia trusts Sanguine because she believes that research is the only way lupus treatment will progress. She values how Sanguine is dedicated to advocating for lupus research in the hopes of finding a cure.


By Neelem Sheikh