My Story: Jephanie Barnes

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What were the steps leading up to your diagnosis?

In March 2014 my mom came back to the U.S. from Brazil because she got really sick. She had breast cancer, which eventually led to brain cancer. We were not aware that she was going to die within a few months of coming back. During that time I was making trips back and forth from L.A. to San Diego visiting and checking in on her. I was in the sun a lot and also under a lot of stress. Around the same time I started having joint pains followed by fever, fatigue, chills, I was dehydrated and I stopped eating altogether – I had no appetite and I could not keep anything down. I was in bed for a month, and during that time I had lost 20 pounds.

My Story: Jephanie BarnesMy doctor didn’t know what was wrong with me so she kept sending me to the E.R. to get fluids, which was the only thing keeping me alive. I finally found a rheumatologist who was able to see me. After many tests, including ANA, he told me I had SLE and started me on Cellcept, Plaquenil and Prednisone.

What lifestyle changes have you needed to make?

I exercise more now and have started eating a lot healthier. I also cut the fake and negative people out of my life. I have learned to listen to my body and to say no to things that I might want to do – I have to space those things out and that's ok.

Who has been there for you? How?

God, family and my closest friends. When I told the people who I have been friends with for years they never judged me. They reassured and encouraged me.

I take it day by day and I know that everything will be ok.

Don't be scared - there are so many people like you going through the same thing.

Don't be scared - there are so many people like you going through the same thing.

What accomplishment are you proud of?

My Story: Jephanie BarnesThat I am going back to school. I will never let lupus stop me from achieving my goals. It may be harder now, but it won't stop me. I thank God that I am able to wake up everyday and not have to depend on anyone else. I can do pretty much everything anyone else can. I am still learning not to overdo it.

I will never let lupus stop me from achieving my goals.

What's your advice to someone else living with lupus?

Don't be scared and know that there are so many people like you going through the same thing. You will have good and bad days but know there are people who love and will support you. Stay away from drama and negativity. Use your story to uplift and inspire other people. Always love and put yourself first and know that it's ok to say no.

Is there anything else we should know?

I am 26 years old. I was born in Brazil and raised in San Diego. I don't know if anyone else in my family has ever had lupus. I take it day by day and I get scared at times, but I know that everything will be ok.

About Jephanie Barnes

My Story: Jephanie Barnes
I was born in Brazil and have six siblings. When I was 11 years old I was adopted by an American family along with my two younger brother and sister. We were raised in San Diego California. My adopted mom just passed away in May due to brain cancer and that's what triggered a really bad flare that led me to be diagnosed.
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