I am a 13-year-old female. I was diagnosed with the kidney disease Focal Segmental Glomerulosclerosis (FSGS) two years ago and have had a lot of bad experiences. I have lost a lot of my friends due to this condition because I am not able to do the things they do anymore, like skating, riding my bike or jumping on my trampoline like I once did. It was back in December of 2001 when my mother first noticed there was something wrong.

I was gaining a lot of weight and my mother thought it was because of the holiday eating. I started getting really tired all of the time. I woke up one morning and I didn’t look like myself, my eyes and face and legs were swollen. I sat down all that day with my legs up. The fluid went down to my legs, ankles and feet. I had a bad cough, so my mother took me to the doctor and they did a urine test.

The doctor called my mother the next day and told her to bring me back in. We went back to the hospital the next day and the doctor told my mother I was leaking protein in my urine, it was 3+ and that I needed to go to Chapel Hill Hospital to see the kidney specialist. We went to Chapel Hill and they scheduled me for a biopsy. The biopsy showed that I had Minimal Change Nephrotic Syndrome. My mother had never heard of it and neither had I.

The doctor put me on a strong dosage of prednisone. I thought that would help me but it never did. Later, I ended back in Chapel Hill Hospital for another biopsy. This time it showed I had FSGS and my problems were just about to begin. I started swelling more and I am on about 8 to 12 different suppression drugs.

Sometimes I go days without urinating and there are days when my face and legs are so swollen that it hurts to walk. Sometimes my stomach swells so much that the doctors have to drain the fluid with needles. Recently, the fluid went to both of my lungs.

Back in February of 2002, I was in the hospital and almost died. My blood pressure was so high and I started having seizures. I was in Cape Fear Valley Hospital at this time and they did everything they could do for me. I had to be life-lined back to Chapel Hill.

The doctors had to drain the fluid from my stomach again. I missed a lot of school and ended up with a homebound teacher, which wasn’t any fun because I was missing my classmates. I then was in and out of the hospitals with constant swelling and high blood pressure.

During times like these, I try to hold on and be happy, but it’s hard. I started feeling like my whole life was all messed up. I will always keep holding on to my faith with God, and I know I will be okay and God will heal me.

I still have relapses and go in and out of the hospital. In July, I was there for three weeks.  The doctor tells my mother and me that there is no cure for this condition and that I might get worse. I am praying that researchers will find a cure.

My mom is working with The NephCure Foundation in collecting old cell phones and ink cartridges. I hope that everyone will give their cell phones and old ink cartridges to The NephCure Foundation so that it can help us all in finding a cure for this serious condition to help people like myself.

I know it’s been very hard on my mom. She’s lost two jobs since I have been diagnosed with this disease and has been put under a lot of strain and stress.

As for myself I am just trying to deal with this it’s not easy at all for me. When I have to be hospitalized and I go to Cape Fear Valley Hospital, the nurses make it a lot better for me. They are so nice and they all are so special to me and I thank God for them because they help in giving me the strength to fight against this condition. I have adopted them as my second family since I feel like I’m there more than I’m at home.

I also notice that a lot of my nurses never really heard of this condition. My mom tries to explain it to them, but she says they will learn about it after reading more about it.

My mom also tells a lot of people to read the NephCure web site to get a lot more educated on this disease. I am on a special diet. I cannot eat things like other children like pizza or salt, which means no potato chips.  I wish my mom could be home with me all the time. I know she has to work. This condition makes it very hard for a lot of families.    

With your help we can find a cure. If you would be so kind to give us your old cell phones and your old ink cartridges we would appreciate it. I will thank you all in advance. We all are awaiting the cure for this terrible disease. Please help us all out. Your support will be gladly appreciated.