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Fykah: Systemic Lupus Erythematosus (SLE)

My heart is in serious condition, my lungs are swollen, so are my joints.

I am Fykah, eighteen, and it is my birthday tomorrow. But I guess I already got my nineteenth birthday present: lupus.

I am recently diagnosed with lupus, yet some complications are still under-diagnosed. I've always had huge aspirations. Now, as my health deterioates at a weird rate, I can't walk around. My heart is in serious condition, my lungs are swollen, so are my joints. My voice is almost not there and here I am, thinking about my nineteenth birthday.

My face is swollen, as some gland in my neck has bloated and somehow I don't enjoy what I see in the mirror. I am very sensitive to sunlight and so I stay in for all day and when I decide to go out, it is after 8 or 9 p.m.

I almost feel drained by going down my stairs, and so I decide against it. It has been days since I walked out in the sun. I always loved sun; now I am forced to hate it.

I am despondent, yes. Because I see my dreams shattering, my family life is breaking apart and I am getting more useless EVERY single day. How long will I continue?

Maybe another thirty years…maybe not another day.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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