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How innovation gave me a second chance at life

05/22/2019 Nicole Rios

As a high school student, I was constantly plagued with something. Mono, the flu – you name it, I had it. In college, the trend intensified, and realizing this wasn’t normal, I started seeking medical answers. Yet, in test after test, nothing came back positive.

 

Others with hard-to-diagnose chronic diseases likely went through a similar experience. Some doctors said it explicitly, others only implied it, but eventually I began to think it myself: Were these symptoms of feeling constantly terrible all in my head? Even though my illness put me in the hospital a few times, nobody could declare anything was medically wrong with me. 

 

In 2011, some stray cats brought fleas into my apartment, leaving me with high levels of stress—a trigger for almost all auto-immune disease flare-ups. A week later, I went to the dermatologist with a bad rash, which resulted in some additional tests. A rheumatologist made a definitive diagnosis of lupus: I had 4 of the 11 markers needed to test positive for systemic lupus erythematosus (SLE), the most common and serious form of lupus.

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Nicole and her husband Danny at an event for Lupus Foundation of America, for which Nicole is an ambassador 

Nicole and her husband Danny at an event for Lupus Foundation of America, for which Nicole is an ambassador 

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Finally, I had an answer, but the worst was far from over. 

 

Lupus is particularly vicious because it can affect every part of a patient’s body, from their skin to their organs to even their mind. It’s an autoimmune disease in which the immune system cannot tell the difference between foreign invaders, such as bacteria and viruses, and the body’s own tissue—so it attacks both, leading to systemic inflammation. This inflammation is often painful and sometimes disfiguring.

 

A few years after my diagnosis, I developed horrible joint pain. My doctors tried several treatments, but nothing seemed to work. I remember spending one birthday in the rheumatologist’s office crying because my hope for living even a semi-normal life was disappearing. Everything in my life got put on pause. I had to quit a job I loved because I couldn’t count on my body anymore.  

 

But I did not give up. 

 

Eventually, after consulting with my physician, I began a new treatment that has since greatly improved my quality of life. At the beginning, a good day was rare. Then, I began having one good day a week. Then two days. Then three days. According to my doctor, my bloodwork had improved as well. It was a strange mix of emotions: It seemed almost too good to be true, but I desperately wanted to believe it was happening. Then finally, after nearly accepting that I would be confined to a bed for the rest of my life, the good days were beginning to outnumber the bad. 

 

I’ll be the first to admit that my life is far from perfect, and managing my lupus is essentially a full-time job. I don’t know how I will feel when I wake up each morning, as my body still swings wildly from “feeling good” to bedridden, often for no apparent reason. But the fact that there are swings at all is a massive improvement, and I feel I’ve been given a second chance at life. Activities that were previously off the table, such as travel, are options again. Last year I even went on cruise, which is something I had given up thinking about before my treatment routine, and now I travel more frequently and farther than I have in about a decade.

I’ve also had the opportunity to meet a few researchers who continue to search for treatments for lupus. These meetings opened my eyes to their passion, and I was overwhelmed when they shed tears at seeing the results of their work – my ability to return a small portion of the things I enjoy doing. I am so grateful to these researchers for their dedication, and I eagerly follow their efforts. 

In the last 10 years, science has made tremendous improvement. As long as these researchers are allowed to continue their work, and as long as patients like me keep raising awareness of lupus, we will get to a future in which no one will continue to suffer or lose their lives at the hands of this disease.