According to a story from abc30.com, Tawny Drain, now 33 years old, was in the sixth grade when she first started having symptoms of a rare illness called Caroli disease. She was officially diagnosed in high school. Some of Tawny’s internal organs were enlarged, which forced her to quit school sports. Despite her diagnosis, Tawny works as a CrossFit instructor, but the job puts a lot of strain on her body. Ultimately, Tawny will need a liver transplant before the organ fails on her completely.
About Caroli Disease
Caroli disease is a type of genetic disorder which is characterized by abnormally enlarged spleen, liver, and kidneys, as well as dilatation of the liver bile ducts. The disease has been linked with polycystic kidney disease and liver failure. Women tend to get Caroli disease more frequently than men. The disease is caused by mutations of the PKHD1 gene, which is also implicated in autosomal recessive polycystic kidney disease (ARPKD). Symptoms include enlarged liver and other organs, jaundice, itching, abdominal pain, fever, cirrhosis, liver or kidney failure, cholangitis, gallstones, and the rare cancer cholangiocarcinoma. Treatment may include certain surgical procedures, antibiotics, and liver transplant. There is a significant risk of death due to complications such as cholangitis or cancer. The disease is more prevalent in Asian countries. To learn more about Caroli disease, click here.
Tawny Needs a New Liver
Tawny says that the itching from her damaged liver can be unbearable at times. Her liver also has lesions and the portal vein has become entirely blocked. The itching has been so severe that it has prevented her from sleeping for days at a time. While she takes steroids to help control symptoms, side effects from these medications will prevent that from being a viable long-term solution.
As her symptoms become more intolerable, a liver transplant from a living donor is the only real solution that will allow Tawny to go back to living a relatively normal life. The Drains are not unfamiliar with serious medical hurdles, however. Tawny’s 27 year old brother Eddy faced and survived leukemia when he was a boy. Tawny’s younger sister Colleen was also diagnosed with Caroli disease, highlighting the genetic nature of the rare illness.
Do you think you could be a possible donor for Tawny? Click here.