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Providing Answers, Support and Hope in Missouri, Southern Illinois, & Eastern Kansas
This is my chapter   |   

Jessica Berry

My name is Jessica Berry. I am fifteen years old. When I was eleven years old I was diagnosed with lupus. I was also diagnosed with muscular dystrophy. I’m not the only one in my family affected; my mom also has SLE Lupus and muscular dystrophy.

Lupus has affected pretty much everything I do, from picking up books, to taking loads of medications in the morning and right before bed. There are times where I just can't get out of bed or can't move because of the pain I am in. My symptoms range and unfortunately I have several; like, the common ‘butterfly’ rash on my face, fatigue, swelling of the joints, Sjogren’s syndrome, mouth ulcers, on again-off again anemia, and Reynaud’s syndrome. Oh, and don’t forget the neuromuscular disease I have to live with.

Going to school has been the hardest struggle for me and catching up with all the work. I battle with trying to keep friends and wanting to give up. My friends often don't understand that stress can exacerbate my lupus and totally break off the friendship. Half the time I want to give up because I feel as though my only purpose in life is to be my doctor’s guinea pig (even though my doctor is awesome!!!). Living life with lupus is really hard. I get depressed because I can't do everything other kids my age can do. If I could do one thing that I currently cannot do, it would be to dance like my little sister. I had to learn that Lupus is a part of me and I can't change that. I had to accept that which was really hard.

My mom gives me hope and strength. She is the strongest person in the world!!! When I grow up I want to study lupus and find some sort of treatment to alleviate lupus symptoms. That or become a Pediatric Rheumatologist to help kids like me who are struggling with their lupus. Back to my mom, she does everything a normal person can even with muscular dystrophy and lupus. My mom has helped me every step of the way and has become my best friend.

The Lupus Foundation of America, Heartland Chapter has helped in my fight by giving me hope. I got to go to the Summer Jam Youth Retreat, a summer camp just for girls living with lupus. Attending camp gave me friends that I can vent to and have my own little support system. We all struggle with the same things. The Heartland Chapter has helped me immensely in raising awareness of lupus.

I want to inspire others so I keep fighting. I spread the word to others who don't know what lupus is, and I speak of my struggle. I show them that I can do everything a "normal" person can do, just in a different way.