Keyaira S.

At the age of 11, Keyaira was diagnosed with Nephrotic Syndrome. Before being diagnosed, she was a healthy child. One day, she woke up with puffiness around her eyes and she thought she was just really tired. Then, after a few more days the swelling progressed, causing her to become very uncomfortable. Her parents thought she was suffering from allergies. After trying different over-the-counter medicines to help the symptoms, they noticed that Keyaira’s appetite was decreasing more and more. She was barely eating but she had such a full feeling because she was retaining fluid. Soon, her entire body was swollen, and she continued to complain about how I was feeling. Her parents took Keyaira to the emergency room, and there they found out that she had Nephrotic syndrome.

Before being diagnosed, they had never heard of Nephrotic syndrome. A day or two went by, and Keyaira had her first kidney biopsy. After a few weeks, the results came back that she had minimal change disease (MCD). Her life changed instantly. As a kid, that was a lot to process physically and mentally. She was very afraid because she didn’t know what any of this meant for her life…

The doctors prescribed high-dose prednisone and Keyaira responded to this treatment very well. Even though the prednisone helped, it caused her to have so many other side effects that oftentimes, she got overwhelmed. She continues to be treated with prednisone and trying to wean off steroids has been such a rollercoaster because her body has become dependent on it. She’s also tried multiple immunosuppressant medications to help with the weaning process, but each attempt has failed. The goal has been to get down to a lower dose or off of prednisone completely but each time we attempt to slowly wean off, she relapses.

Having this disease has caused Keyaira to have other complications as well such as pulmonary embolisms, excessive weight gain, bone shedding, and more. In 2020, she got Covid-19 and almost lost her life. She lost half the blood in her body and being in the hospital once again for the millionth time, she found herself becoming depressed. Between the prednisone and her own thoughts, it became overwhelming. She knew that she didn’t want to stay in this mindset and sought help, went to therapy, and over time began to feel better. Having this disease is such a rollercoaster, but Keyaira has found so much joy in sharing her story with others. Even though this disease is an everyday fight, knowing that her story can impact others, makes her want to continue fighting. We all endure something in life, but it’s up to us to find the beauty in our stories. She has decided that this disease will not tear her down, but instead she will use it as fuel to help others.