Sandesh K.

Teenager, FSGS

I was 17 years old when I was diagnosed with Nephrotic Syndrome. It was first seen because my eyes were swollen. We went to an eye hospital. After a few days we noticed swelling in my legs, and we went to the hospital for a check-up. There, they did a lab test and found protein in my urine. They did a kidney biopsy and concluded that the disease was FSGS.

After that, they started treating me with steroids. After some months of medication, I didn’t respond and the doctors started another immune-suppressive medication, called Tacrolimus, which I also didn’t respond to. The last option was Rituximab. As we were doing treatment in Nepal, we decided to go to India to see if they used any different treatments, but they did the same protocols there. We came back home and did three infusions of Rituximab in Kathmandu: two in a gap of 15 days and the third one in a gap of one month. Unfortunately, the doctor informed me that I didn’t respond at all.

It’s been almost two years, and my kidney function has declined. I am on dialysis right now. The last option now is to either stay on dialysis or pursue a transplant. I am 19 years old and I have to go for dialysis twice a week. I dropped my college for two years, and started this year again from grade XI. Despite suffering from kidney failure, I am still trying the best I can. FSGS has made my life hard at a very young age.