Stephanie D.L.R.

Adult, Nephrotic Syndrome

I woke up one day and my face, neck, arms, and hands were all swollen. I was told to take allergy medication because I must have been having an allergic reaction to something. I did just that and it seemed to go away.

But then I started having recurring episodes with an intense stomach pain, so much so that I would end up in the hospital. Many times, these issues were brought on by my period when I hit puberty. Finally, I woke up another day and felt terrible, and was noticing some swelling again, so I went to my pediatrician and she decided to run some tests, including a urinalysis. I was finally diagnosed with Nephrotic Syndrome and she referred me to a nephrologist.

I was originally told that this may be temporary, and I may not have it as an adult, but I sit here 13 years later still living with Nephrotic Syndrome. I have had several years where I have been great and have been in remission for long periods of time, but recently I have been continuously nephrotic, even while taking medication. I have struggled with understanding and accepting my condition for years, but as I have gotten older and become a mother, I have realized that it is a part of me and I shouldn’t hide it or be ashamed. I want to educate people and be supportive to others struggling with the same uncertainty that I struggled with, especially as a teen. I also want to learn as much as I can, because it will only help me in my journey of acceptance and growth.