The Nephrotic Syndrome Foundation Podcast

Breaking Boundaries- Cynthia Niemeyer's Battle With Nephrotic Syndrome

Episode Summary

At times in life, we come across people that can’t help but inspire. They embolden us to face challenges with a new perspective and fresh attitude. Cynthia Niemeyer is one of those people. From the early age of 2, she has fought for her health. Facing several diagnoses—including minimal change disease—she was fondly nicknamed, “Miss Perky” by those who knew her best. In this episode, you’ll hear about the foundation of a healthy family, the importance of finding something you love, and the power of chasing your dreams.

Episode Notes

(4:12) 10,000 foot view of Cynthia’s story with Minimal Change Disease…

(5:11) An American nomad…

(7:40) A complicated medical history…

(11:01) Strong parents and a strong support system…

(14:11) “I don't ever remember a specific time of coming to that realization. It was woven into daily life. I never remember a time of not having Nephrotic Syndrome.”

(16:14) Various treatments during elementary years…

(20:34) The changes with Cellcept…

(24:25) Weaning off of Cellcept and hoping the disease would be just a pediatric condition…

(27:21) Pivoting her life and finding horses…

(30:42) “I was at the barn all the time. I went there every day after school. I was there all weekend. It really became the place that I just invested myself in, and could absorb, and be someone, at that barn.”

(35:21) Making healthy lifestyle choices that are Nephrotic Syndrome safe…

(37:54) “I think it's really important that as people have these conversations that we don't forget the siblings.”

(41:20) Separating Nephrotic Syndrome from identity…

(44:52) The ups and downs of Prednisone, and getting into remission…

(47:45) “At a very young age, when I started hearing doctors potentially tell me how this could limit my life I was just so determined that they were wrong.”

(50:12) Hard moments and the tool of therapy…

(54:39) What do you think contributed to your remission?

(56:47) A life experience that has strengthened and ignited…

(1:03:25) Advice from Cynthia…