Tabitha Frank, the Founder and President of Endosalpingiosis Foundation Inc., was diagnosed with Endosalpingiosis herself, inspiring her to found the very first nonprofit organization dedicated to this rare disease. Tabitha is an avid advocate for both women and rare diseases.

Her personal rare disease journey began in her early twenties when she began to experience pelvic pain. In an effort to relieve her pelvic pain, Tabitha underwent a surgical procedure that removed both her left ovary and fallopian tubes. Unfortunately, the surgeries did not provide her with any relief. In fact, due to severe complications from the surgeries that removed her ovary and fallopian tubes, her left kidney also had to be removed.

 

In 2013, Tabitha gave birth to her son. She calls him her "miracle child" because of experiencing a countless number of miscarriages over several years of attempting to conceive. To avoid experiencing any more traumatizing miscarriages, Tabitha decided to get her tubes tied. During her tubal ligation procedure, her doctor discovered that she had Endosalpingiosis. The diagnosis was bitter sweet because Tabitha finally had an explanation for her chronic pelvic pain but there is not much known about the condition because it is so rare.

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Tabitha recalls her doctor handing her a print out from a website he googled, before informing her that he did not know much about the disease and that he was not interested in learning about the disease. Subsequently, he immediately left his office after expressing a brief half-hearted "good luck."

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Tabitha reacted to her diagnosis and her doctor's subsequent abandonment by creating a private Facebook support group that currently has over 200 members. In 2017, Tabitha decided to take the next steps towards raising awareness and advancing clinical research for Endosalpingiosis and founded Endosalpingiosis Foundation Inc.