Undiagnosed Disease Day

Today is Undiagnosed Disease Day, a day to celebrate those living with an undiagnosed disease and their families as well as to remember the ones we have lost. Today, we are celebrating Danae, who lives with an undiagnosed liver disease. Danae shares her story here: 

“I don’t often share my story because in the beginning I felt like there was a stigma with having liver disease and because I never wanted my disease to define me. But I think it is time to tell my story as I want to not only be a part of raising money for liver disease research but also because I want to be an advocate for others like me that have had to navigate a very difficult situation with limited resources. Twenty-five years ago, while I was pregnant with my daughter, I turned yellow. The doctors all told me that my jaundice was caused by my pregnancy and when I delivered my daughter I would immediately get better. 

That did not happen. 

What happened was I underwent surgery to remove what the doctors’ thought were bile ductstones. When I woke up from the surgery the doctors told me I had cancer and I needed to get my affairs in order. They had found a tumor that had compressed my bile ducts closed, and it could not be removed as it was wrapped around my portal vein. I was 28 years old, and I was a new mom. The news was devastating. A few days later the biopsy came back, and, by the grace of God, my tumor was benign. I lived with a tube coming out of my right side for four years to drain my bile as the doctors did not know what to do with me. After working with 6 different doctors through that four-year period, I was able to locate a doctor who was able to put in an internal stent to drain the bile.  Although the internal stent solved an issue, it began another slew of medical procedures and complications. I have since been diagnosed with an auto-immune disease, IgG4, and I have lesions that have impacted the health of my liver. One doctor shared with me that I was the most complicated case he has ever seen. 

I recently underwent surgery because the doctor felt that a bile duct resection would work to remedy the issue of the bile duct being compressed.  I was excited to have the surgery as it would dramatically improve my quality of life.  Once again, I woke up to disappointing news that the surgery was not successful. This surgery was followed by three different hospital stays due to an infection of the incision.  I also developed ascites and had to have my abdomen drained twice.   

Currently, my treatment plan consists of undergoing an endoscopic retrograde cholangiopancreatography every four months to clean out the stent so that it does not get infected. I take medication for the autoimmune disease and the doctors continue to watch my lesions all with fingers crossed that a transplant will not be necessary. 

I share my story to let people know that my journey has been scary, frustrating, overwhelming,and sometimes depressing.  I have been lonely and yet I have been loved. The answers have been slow to come, and the future is still not clear. One of the reasons I have had to struggle so much is because the research regarding liver disease is limited. I have come to understand that because of the ‘stigma’ of liver disease the funding and the ability to raise money has been a challenge. With limited funds in the research arena, doctors are compromised on how to best treat patients.  

There is a resiliency that lies within me, and I want to share that with others.  If I can help one other person on their journey, if I can contribute to get the word out about liver disease and the need for more research then my journey means something.”

If you or a loved one has an undiagnosed liver disease, or is struggling with a new diagnosis, you are not alone. We are here for you. You can call our free national Helpline at 1-800-GO-LIVERor chat with us online at www.liverfoundation.org.

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