Written by Anirudh Koneru
Edited by Cayla Xue
Published on 9/16/2020
Being a mother can be hard. From the very start, it is an exhausting and difficult process that
can involve many complications and health risks. Most first-time mothers have to deal with a lot, between all the extra care they have to take and also the fear that something could happen to their child.
However for Tabitha, it was all the more difficult as she lives with endosalpingiosis: a rare reproductive disorder that often renders patients infertile. At times even the people who loved her most could not understand what she was going through. But despite it all, she has emerged victorious, a champion of change for other women fighting the same battles, and with her miracle son for whom she is extremely grateful for.
The Journey Begins
Tabitha L Frank had always wanted to be a mother. For 15 years, she tried having a child, but every time she got pregnant, she suffered a miscarriage. Back then, she had no idea that there could be any reason for this other than mere chance. But everything
changed for her when she got pregnant for the final time in 2013.
Up until that point, Tabitha was quite an ordinary person, with no reason to suspect that anything was amiss with her health. Born and raised in Madison, Wisconsin, Tabitha now lives in Danville, Wisconsin. After a total of 10 miscarriages, Tabitha had all but given up hope that she could ever carry a child of her own. Her luck took a turn for the better though, when she finally carried a child to term in 2013. Her son was born that December, a true miracle and blessing for Tabitha.
Complications
Unfortunately, Tabitha began experiencing severe complications after giving birth. Her physicians monitored her closely, but were bewildered by her symptoms. In February of 2014, she underwent surgery as her doctors attempted to understand the cause of her complications. They came back with tissue samples from her uterus and fallopian tubes which were sent off for lab work.
When the results came back, the doctors told Tabitha that they believed the cause of her problems was endometriosis, a condition in which the endometrial lining of the uterus forms abnormally outside this organ, and instead forms in various places on the surfaces of other organs, usually in the abdominopelvic cavities. However, in order to confirm this diagnosis, her doctors reached out to various medical research universities throughout the United States, as they themselves were quite perplexed by Tabitha’s case.
A Diagnosis
Finally, after months of confusion and frustration, Tabitha received a diagnosis: a condition known as endosalpingiosis. This condition is quite similar to endometriosis, but there are a few key differences and it is important to note that they are not the same. Specifically, endometriosis involves tissue from inside the uterus, while endosalpingiosis involves tissue from inside the fallopian tubes. The location of this endosalpingeal tissue also varies; while endometrial tissue in endometriosis is usually restricted to the abdominopelvic cavity, endosalpingeal tissue in endosalpingiosis patients has been known to cause blood clots and hemorrhages in the lungs and even the brain. For more information, read our article on endosalpingiosis (Click HERE).
The diagnosis was a big relief for Tabitha. Finally, she knew why she was in so much pain following the birth of her son. But there was still a lot that she didn’t know about her condition, and in fact, even her doctor knew very little. “My doctor handed me a piece of paper he found online, and said here you go. I don’t know about this disease, he goes, and I’m not really willing to learn about it, so good luck. And [he] walks out of his office.”
Acceptance
Initially, Tabitha and her family were shocked. The name of her disease meant next to nothing to her or her family, and they had never heard of such a disease even existing. Overall, there was a lot of confusion and worry; the situation seemed surreal.
For a long time, her family was in denial. Though they tried to support her through her struggles, they simply could not wrap their heads around the fact that Tabitha had such a rare disease. Slowly, though, her family started coming around and supporting her through her struggles.
Sadly, Tabitha’s struggles had only begun with her diagnosis. As a result of her pregnancy, her endosalpingiosis had worsened considerably, and she had to undergo surgery nine times as the surgeons attempted to remove the tissue that was causing her so much pain. As a result of medical errors, though, her fallopian tubes were tied and her kidneys had to be removed. It seemed as though things were looking down for Tabitha.
After this, her recovery was slow. There were days during which her condition became unbearable, forcing her to cancel any plans she had made. Communicating with her family through her pain was sometimes impossible, and she could do nothing but stay in bed all day. But slowly, she began to recover. Her condition has improved remarkably over the course of the past few years, leaving her in a much better place than before.
Taking Action
After years of confusion, fear, pain, and acceptance, Tabitha had become quite experienced with navigating her illness as well as the situation with her healthcare providers. She recognized, though, that like her, there were many others who were starting out on this journey fearfully, unknowingly, and on their own. Understanding the significance that support and understanding can provide, Tabitha decided to take action and help change the way that women with endosalpingiosis had to lead their lives.
Tabitha, inspired by her own journey, created a facebook page called Endosalpingiosis Foundation INC to provide support and a safe space for women with endosalpingiosis. Currently, this page has involvement from over 200 women from around the world with this disease, including members from America, Australia, the United Kingdom, and China.
Her success with her facebook page inspired her to start a nonprofit organization a few years later in 2018, which she founded and called Endosalpingiosis Foundation. Endosalpingiosis Foundation INC is dedicated to fundraising and creating awareness as well as providing support for women with this condition.
Through her organization, Tabitha pushes for legal change that provides more resources for women with this condition. In May of 2018, she received an endorsement from the Endometriosis Association Inc., and in August of 2019, Tabitha was able to meet with Congressman Bryan Steil through Rare Across America to discuss legal reforms that could be made to support women with endosalpingiosis. She has worked with Senator Tammy Baldwin from Wisconsin, who has a rare disease herself.
In February, 2020, Tabitha was invited to attend a NORD conference in Washington D.C., where she was able to listen to speakers on the subject of rare diseases, as well as participate in events and conferences where she learned that there were many other people with rare diseases who had gone through many of the struggles that she herself had experienced.
Final Words
Despite the immense struggles that Tabitha has faced throughout her life, she still fights to bring change to the world. As someone who understands what it’s like to be alone and supportless, she hopes that she can create a platform for women so that they never have to go through the same things that she went through.
“Don’t give up. Keep on going no matter how hard it is,” she advises when asked what advice she has to offer for others who are trying to advocate for rare diseases. Though it may be difficult at times, and though there may seem to be too many obstacles to ever get past, you will always meet your goal if you persevere. There are tons of resources available for people attempting to advocate for rare diseases, including Global Genes and NORD.
She also shared her two cents on what to do as a patient. “Do as much research as you can. You know, look it up.” Use the resources on websites like the NIH, Global Genes, and NORD to help you learn more about your condition. Take your family members and loved ones with you when you speak with your doctor, because as the ones who will be supporting and caring for you, it is important for them to understand and accept your needs and help you. Finally, there is a huge support community online, in the form of facebook groups or other social media platforms.
Now, after nearly 6 years of fighting, Tabitha has come to terms with her condition and has found peace and satisfaction with her life. Most people with endosalpingiosis are unable to get pregnant and give birth, so she counts herself blessed for having her son. She wants him to see her and be proud, and to know that her life holds meaning. She wants him to know that his mother, despite all of the difficulties that she faced, did not give up and fought for herself and for other people with her condition.
“I can leave a legacy for him. Hopefully, he can carry out.”
We believe these stories are important for others to hear, not only for awareness of the disease itself, but also for the support it provides to every patient. Thank you so much to Tabitha L. Frank for your bravery and for sharing your story with us!
Check out Tabitha’s organization at https://www.endosalfoundation.org/ and her Facebook Page Linked below in the resources!
Resources
Because it is so rare, resources for endosalpingiosis are often quite difficult to find. However, Endosalpingiosis Foundation is a great resource to get support and find help! There is also an awesome community and network on their Facebook page, Endosalpingiosis Foundation INC.
Organizations:
Facebook Groups:
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Thank you for reading!
Citations
Frank, T. (2020, August 18). Virtual Interview through Zoom.
Frank, T. (2020, August 12). Virtual Interview through Google Forms.