President and Founder
My name is Tabitha Frank, and I am the president and founder of Endosalpingiosis Foundation INC. Six years ago, I was diagnosed with this rare disease, and a few years after that I created the foundation.
The purpose of the foundation is to advocate for women with this rare disease, help women receive help in various of ways. In my early twenties I started having problems with cyst and experiences pelvic pain which started my journey. I had my left ovary and fallopian tube removed in the same year. After that I was in out of the hospital and doctor offices trying to understand what my body is going through.
Due to complications from surgeries I unfortunately lost my left kidney. Things did not improve with the pain or seeking medical answers. In 2013 I gave birth to my miracle child, after years of having of trying and countless miscarriages. I decided to have my tubes tied shortly after the birth of my son, and that is when they discovered that I have Endosalpingiosis. The diagnosis was a big relief for me finally, I knew why I was in so much pain for some many years.
There was still a lot that I did not know about the condition, and in fact, even my own doctor knew extraordinarily little. “My doctor handed me a piece of paper he found online and said here you go. I do not know about this disease, he goes, and I am not really willing to learn about it, so good luck. And [he] walks out of his office.”
I created a private support group on Facebook for women to come and have a safe place to connect with fellow women. We currently have over 200 members in the support group. A few years after that I created the nonprofit with the help of Global Genes.
In 2019 was my first year working with NORD and their rare across America that allowed me to meet Congressman Steil.
In February, 2020, I attend a NORD conference in Washington D.C., where I was able to listen to speakers on the subject of rare diseases, as well as participate in events and conferences where I learned that there were many other people with rare diseases who had gone through many of the struggles that I had experienced.