NN&I - August 2010

34 Nephrology News & Issues August 2010Subscribe to our free eNewsletter at www.nephronline.com Running full courtHow I am overcoming my obstaclesBy Dawn EvansUpon my diagnosis with focal segmen-tal glomerulosclerosis (FSGS), waves of shock and dismay were my initial reactions. Discouragement and lack of motivation soon followed. Medication, long nights of tears, extreme fatigue, and basketball, or lack thereof, were all I thought my life was about. I felt alone and envious of those around me who were perfectly healthy. My family was just as affected by FSGS as I was. My father, Rodney Evans, has spent his every moment trying to find a cure or a safe, effective treatment that would make a transplant unneces-sary. My mother, Rosalyn Evans, and my brother, Dale Evans, have held my hand and given me my courage back. In dealing with my condition, my coaches and my teammates have been extremely loving and supporting. Without question, my family has been my strength and my courage. Because of the tremendous outpouring of love and support from people around me, I have been able to regain my own faith and courage and I can now use my dis-ease to help othersand do my part in finding a cure for this condition that haunts many. Now that we have come to grips with my condition, my family and I have focused on treating and curing, (yes, curing), my disease. We have com-bined medical treatments and alter-native treatments to reach the best possible outcome. I decided to take control of my treatment and my body. Being diagnosed with a critical illness doesn't mean one has to give up con-trol. Being diagnosed with a disease and becoming a patient does not mean that one has to follow a lifestyle totally Ms. Evans, 21, is a student at James Madison University in Harrisonburg, Va., and is ranked fourth among the nation's scoring leaders in NCAA Division I Women's Basketball, averaging 24.8 points per game and leading her team to the NCAA Tournament. She was diagnosed with FSGS last year. We need to find a cureThe Nephcure Foundation believes in patient empowerment and being an active participant on the treatment team and in the decision-making process. They and their ambassadors are determined to find a cure for this dreaded disease. I am proud and honored to join the likes of Alonzo Mourning, Herschel Walker, and Jessie Jackson, Jr.and serve as an ambassador for The Nephcure Foundation. NephCure's primary resource is its website (www.nephcure.org), which serves as a tool and informational center for families dealing with the Nephrotic Syndrome disease group, of which FSGS is a part.Dawn Evans dictated by others, medical profession-als notwithstanding. FSGS is the second leading cause of kidney failure in children and the risk for blacks to develop FSGS is five times higher than for whites. Now that I am empowered, I can lend my hand to help the cause and hopefully make a difference. EMPOWERMENTIndividuals with any illness may encounter obstacles on the road to recovery: tem-porary down time from work, needing assistance with daily chores if an arm or leg is healing, and taking medications that can make a difference in a return to normalcy. Those hurdles can be magnified if the illness is chronic. Kidney disease is an ever-lasting condition; a kidney transplant is not a cure, just a treatment for a conditionjust like dialysis. These stories in our annual section on patient empowerment talk about overcom-ing those obstacles. The message is clear: if you don't try, you are bound to fail.Mark E. NeumannOvercoming the obstacles of kidney diseaseEvans at home on the basketball court. Empowerment_NNI-0810_8.indd 34 7/15/10 5:50:41 PM