Hi I am Ciana I am writing this story to share about this rare disease no one knows about called Nephrotic Syndrome. Nephrotic Syndrome is where the protein that your body stores leaks into your urine. This disease has effected so many people around the world, Nephrotic Syndrome doesn’t have a cure or cause. I have a different type of disease like Nephrotic Syndrome it’s called “IGM Nephropathy”. IGM Nephropathy also (FSGS) which also stands Focal Segmental Glomerulosclerosis is a cause of nephrotic syndrome that leads to kidney failure in children and adults. More than 5400 patients are diagnosed with (FSGS) or Nephrotic Syndrome every year but this is just a guess because of limited number of biopsies are performed. There is a person who I knew when I first got diagnosed and helped my family have hope that someday will have a cure for this disease, their names are Kelly and Macy.                                                                                                                                                       

Macy was diagnosed with Nephrotic Syndrome at 3 years old. Macy was treated with high doses of Prednisone and placed on a low salt diet. The Prednisone made her continually hungry and puffy. She gained 23 lbs. After just 6 months she became steroid resistant and the Prednisone stopped working. As she weaned off the steroids she became steroid toxic. Macy vomited 3 to 8 times a day. Her legs stopped working and she could hardly walk across the room. Macy had a kidney biopsy that confirmed she has FSGS from Nephrotic Syndrome. Chronic Kidney disease has many awful side effects. Like high blood pressure, puffy eyes, sometime have blood in your urine, diabetes, A couple years ago Macy developed a blood clot 85% the size of her right Atrium. She was in the PICU for 17 days. Kelly said in her own words that “Macy is surviving by the grace of god.” She developed two very serious blood infections. She went into septic shock, and almost died. Macy spend about 45% of her time in the hospital. FSGS controls every aspect of our daily lives. Macy take up to 16 different medications each day to sustain her life. Macy visits her Nephrologist very often. Now she is on a low sodium, low potassium, low phosphorus, and low fat diet. Kelly is constantly worried about the germs because of Macy’s immune system. Every day feels miserable. Yet she keeps the biggest smile on her face you have ever seen. In less than 2 years Macy has reached End Stage Renal Disease. She started dialysis a little over 5 years ago. She was in the hospital for 2 years. Macy had kidney failure and got a kidney transplant. This June of 2016 she will be celebrating 5 years of having her transplanted kidney.

Now this is my story. In March 2011 I woke up with swollen ankles and my eyes were almost swollen shut. We immediately took me to the Pediatrician. Many test were run and soon enough I was hospitalized the next morning. I spent the next 6 days receiving various treatments… and I was diagnosed with Nephrotic Syndrome. I had a ton of bruises on my are arms from the IV and bloodwork. I was released the night before my 7th birthday and when I left I was put on a pretty high dose of Prednisone. After just two years later I became steroid dependent. My family and I were unsure of our future. My ER doctor and I became a very close family friend. I got to see my Nephrologist once a month at Rocky Mountain Children Hospital. I had my blood drawn at least once a month. I had to take about 7 medication every day. In April I experienced a ton of relapses. On June 30th I got a dog because my anxiety was so bad after my favorite cat died so I got a dog and named her Rosie and I trained her to be a therapy dog. I was blessed for being in remission for 2 years straight. We had our annual Nephcure walk in 2012 which happens every year. I had my first kidney biopsy in March 2013. Around the same time, we also found a combination of immunosuppressant call Prograf and Cellcept The biopsy confirmed IGM Nephropathy. My family and friends has always kept me happy. This year in December I suffered my first relapse in almost 4 years and it was hard for our family but with the support and doctors I’m officially in remission. When I relapsed it was right after I got off of Prograf and we figured out that we have to have the combination of Prograf and Cellcept. And I  hope that the people around the world that have to deal with this disease will heal and that we will find a cure. If you want to donate to this disease type in Nephcure Kidney International and in the website there should be a button that says “DONATE NOW” I hope you choose to donate so we can find a cure to Nephrotic Syndrome, IGM, and FSGS. I am only a 12 year old trying to find a cure for a disease that no one knows about