Updated: Apr 4
Hi friends! I am campaigning with a very special research organization that helps find cures and studies rare diseases. This organization is National Organization of Rare Diseases (NORD). I came to know about NORD through my own experience. In 2017, I had months of unexplained weight fluctuation, headaches, blurry vision, and more. I went to specialists in some of the most well-known universities. Test results would come back as normal. My doctor finally asked for an MRI scan to rule out any chance of a brain tumor. The results came back that I had a rare pituitary tumor that was causing these issues. I had found this news while I was at work in my office at Macy’s corporate in NYC, just several days before my college graduation. I was in shock. I was supposed to be ecstatic to graduate but instead found out I would need brain surgery to remove the tumor. Not only would I need brain surgery, but I came to realize that there isn’t much of a “treatment” for the illness. I would live the rest of my life on ten plus medications and more life changing circumstances. I soaked in all the information as much as I could, held myself together, and scheduled my surgery a week after college graduation.
Thinking I would be in the ICU no more than four days, I ended up staying in the hospital for two weeks. My sodium levels continued to drop to dangerous levels during my stay in the hospital. My family stayed overnight with me just to give me water through a sponge since I was not allowed to drink water despite extreme thirst. They helped me to simply move my arm or pick up a fork to try to eat a bite of something. I could not even walk or hold my head up. It was ten times worse than what we had anticipated. I also came to find out that my pituitary was not able to be saved. The surgeon had no option but to remove the entire pituitary with the tumor during surgery. Not only would I be living a life operating on medications but had to function without a pituitary gland. The surgeon indicated I had the tumor, unknowingly, for about 5-10 years. The diagnosis I had was exceedingly rare, effecting about 3% of pituitary tumor patients.
I met with endocrinologist and neurologist constantly after the surgery and still maintain regular checkups. Time has passed since the surgery but even to this day, I am left with unanswered questions to my diagnosis since it is so rare. I often research and read similar stories on NORD for up-to-date research findings. I found NORD to be the most resourceful foundation for, not just my diagnosis, but for other rare diseases that are still being researched across the world. So many illnesses are either being researched or are not even yet discovered. For those that are suffering with an unknow cause or have a loved one with similar experiences, NORD is the resource to turn to for direction and to not feel alone when questions are not answered.
To help support NORD with their continued research to save lives, Crumble’s By MV will be donating 7% of every order to National Organization of Rare Diseases. Each order will contribute to this amazing foundation and help lives across the world find direction and a starting place for their rare disease. I am so thrilled and honored to be campaigning with NORD. They have helped me. Now it’s my time to help them and those searching for answers.
NORD Website: https://rarediseases.org/
-Crumble's By MV