THIS IS MY STORY ~Selam Bereket

I was diagnosed with SLE ~Systemic Lupus Erythematosus as a young adult at the age of 15.  Prior to being diagnosed I underwent a verity of different tests to determine what it was that I had.  I was constantly in and out of hospitals.  Every day was a challenge because I was so weak and unable to do much for myself.  I was extremely fatigue and couldn’t understand why my body was swelling when I didn’t have much of an appetite, I felt like a balloon ready to explode at any given moment.  After several months of testing, they determined that I had a severe case of Lupus.  The Lupus attacked my kidneys and I was face with two choices: to do chemo therapy for three years or to start dialysis right away three times a week.  It was hard to accept all that was happening to me but I decided to do chemo therapy instead of kidney dialysis.   

Emotionally I was drained having to go through this at such a young age; I was unable to go to school so I took time off.  I did home school until I was able to feel better, once I felt a little better I began going back to school part time.  Once I completed my treatment, my kidneys returned back to full function and I was able to live a more normal life, but with medications of course.  I was able to finish high school, attend Portland State University and complete a BS in Health Science with a concentration in Community Health and minor in Communications.   Growing up, I had a lot of ups and downs.  I remember countless times where I was unable to get out of bed, even the thought of lifting a finger was painful; every joint in my body ached extremely bad, it felt like needles and pins stabbing me (the pain was unbearable).

During December 2008, I started feeling ill; I woke up one morning unable to barley open my eyes because my entire face was swollen.  My sisters rushed me to the emergency room in which I stayed there for over two weeks.  I felt as if I was re-living my childhood experience again, when I find out that my kidneys were being attacked by Lupus.  I came home after being discharged only to come back the next week with my whole entire body being swollen yet again, I gained over 20 pounds in fluid.  A few months down the road, I started chemo therapy once again, this time only for six months.  Unfortunately this time, the chemo therapy was unsuccessful.  The next step was just to try high doses of immunosuppressive mediation (which I have been on many years), which led me to be more sick and left me going in and out of hospitals.  My kidneys were failing fast; in November 2009 my kidneys shut down and I immediately was put on emergency dialysis where a catheter was surgically implanted in my neck and ran to my heart to dialysis with.  With this catheter, you are not able to get it wet as you are easily able to get an infection and die from doing so.  I have had to surgeries to get a fistula in place (one to connect my artery and vein together, the other to bring it up to the surface).

Lupus has affected me in MANY ways, it is holding me back from living my life fully.  I am in constant pain each and every day.  I have been on prednisone (a type of steroids) for ten years, this mediation was what made my bones brittle and weak.  Taking prednisone for so long is how I had three compression fractures on my spine, which left me in inconceivable pain and at bed rest for months on end.  I am still currently on dialysis three times a week for four hours each visit.  I wish that there was an organization that directly could have helped and other lupus patients with any financial needs, support and education awareness.  While growing up, having an organization like Sisters Against Lupus would have positively impacted my life in a lot of ways.  By Selam Bereket

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