Alice A.

Adult, FSGS

January 14, 2016. I will never forget that day. The day the doctor called me to reveal the result of my kidney biopsy, the day I was diagnosed with FSGS.

The symptoms started two months earlier, with lower limb edema, hypertension and hypercholesterolemia. The cause of the disease: unknown! How could I, 23 years old, healthy, newly licensed in nutrition, with my whole life ahead, deal with an illness of this kind?

Prednisolone treatment started. In the first five months, disease control was happening, but the side effects began: Cushing’s syndrome, unexplained weight loss (60kg at the start of treatment to 48kg), and pain in the joints and bones. We were in August 2016 and the pains were so strong they kept me from walking.

In September, I was hospitalized. After a week of hospitalization, I was diagnosed with secondary osteoporosis, caused by the Prednisolone. I spent the rest of the month in the hospital. When I left the hospital, I returned home and had to go back to learning to walk. Between physical therapy, acupuncture, and daily physical exercise, I came back to life, little by little. The FSGS was out of control with everything that happened; proteinuria increased significantly and, by order of the doctor, I was without medication in the following two months.

In January of 2017, I started a new treatment for FSGS with Tacrolimus. Things are going much better with no side effects. The new medication is making a desired effect, slower out, but what matters is that a year after leaving the hospital, I’m here, even more courageous to face this battle.

We can not give up just because life did not go as planned, even if it seems like the easy way out. We have to be curious to want to know what comes next. The secret is to always face life with a smile.