Nicole Jackson-Taylor / Lupus (SLE) (Spanish Captions Available)


NICOLE JACKSON-TAYLOR: My name is Nicole Jackson-Taylor, and I am originally from the Washington area. I was born in D.C., and I only left to go away to college, and I’ve been here ever since. I was officially diagnosed with lupus when I was 24 years old. It was just a couple of months after giving birth to my son. It was, I have to say, a joyous diagnosis. I know that sounds kind of crazy, but I finally was able to mentally get relief because I knew what I had. There were urinary tract infections, hair loss. I was having fevers just out of the blue. It got to the point where the doctor that I was seeing at the time, she actually said, “I don’t feel comfortable in continuing because I don’t see the progress that I would like to see in how heavy of doses that we are giving you,” and luckily, there was great symposiums that were going on a lot at NIH. And she kind of bumped into a colleague, and she said, “I have great news for you. I would like for you to leave me and go on over to NIH.” And I must say that from that day forward, it was a blessing. Right now, I am currently back in chemotherapy. I am a Cytoxan patient again. Unfortunately, the kidneys have become active with disease, and—but because of this great team, they were able to find the areas of inflammation and put the type of Cytoxan together. And they are hoping that with this particular treatment, I will be able to irradiate all the areas of the inflammation and catch it before there is any permanent damage. To be 23 years strong and have a team that can look me in my face and say that we’ll never walk away in trying to help you and knowing that there’s always someone that’s working to try to find a cure and even if it’s just a temporary cure, it really makes you feel that someday, somehow there will be a cure for lupus. I just hope that there will be more types of studies that will be able to be done so that there will be more medications that will be able to be dispersed. I just would like to say that this has been a fabulous experience in being here, and whenever I talk about being ill, people just don’t understand how I can be so happy in talking about it, because it has been an incredible journey for me. And knowing that life will still continue and I have people around me that are always trying to help make that quality of life better, there isn’t a day that I worry that I can’t pick up the phone and reach out to someone at NIH that will not try to help and make it better.

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