Discover Nicole's journey with lupus, from years of undiagnosed symptoms to finding strength in family support. Join her in raising awareness and advocating for change in understanding this chronic condition.

My name is Nicole, and I was just recently diagnosed with lupus in late January 2024. My diagnosis was both devastating and relieving for me. The idea that this disease is so permanent really affected me emotionally. But at the same time, I was so relieved that there was FINALLY a name to put to everything that I had been going through. I was thankful that my doctors now had a plan and knew the next steps to treat this.

I had been unknowingly dealing with symptoms for a little over five years. My first symptoms began when I started to have some problems with my eyes – I was ultimately told that it was uveitis and was sent to Wills Eye Hospital in Philadelphia because my ophthalmologist was stumped. I frequently traveled from South Jersey to Philly multiple times a month, only to be told that the doctors would just continue to monitor my condition; and they prescribed steroid eye drops to help when I had eye flares. 

I managed to get through the next year or so without any major symptoms until I eventually came down with Covid-19 in October of 2022. I suffered from Covid for about a week, and the day after I started to feel better from the Covid, I was hospitalized for pancreatitis – which is not something I had ever experienced prior. It was brutal! While I was in the hospital, the medical team performed a CT scan, which eventually showed that I had mesenteric panniculitis (a rare, but chronic condition that causes swelling and inflammation in the tissue lining surrounding your organs).

I was immediately instructed to see an oncologist because my doctors were nervous that this could ultimately be lymphoma. 

So, in June of 2023, I underwent a laparoscopic biopsy to remove a lymph node and test the mesenteric tissue for cancer. I can happily say that the results came back negative for malignancy! It was at that point that I decided it was time to schedule with my rheumatologist to get on the right path to figuring this out.

Finally, after seven months of tests, scans, labs, steroids, and pending diagnoses for RA and PsA, my rheumatologist concluded that my symptoms more closely reflected that of lupus and gave me a permanent diagnosis.

I am fortunate enough to come from a very large Irish family, where your aunts/uncles feel like second parents and your cousins feel more like siblings – I have a HUGE support system both at home and extended family. I pride myself on being someone that people can rely on – no questions asked! When someone needs something, I’ll be there to help; I’d give the shirt off my back to anyone who needs it. And I think that maybe this diagnosis is a subtle reminder that it’s ok to slow down and ask for help sometimes. Other than dealing with symptoms like joint pain and swelling, extreme fatigue, hair loss, uveitis, facial rash and swelling, and sensitivity to the sun and heat, I believe my struggle with asking for help has been the most difficult.

I walk because I want to raise awareness and be involved! I want to walk for those who are unable and are affected by this disease worse than I am. 

The opinion that people think this disease “just makes you tired” is one that I want to change – I want people to know that there are millions affected and each person is affected differently. I want to join the FIGHT to bring about CHANGE!