Five years ago, when my husband Armel was 29, he started having recurrent cholangitis and other symptoms related to liver problems. Specialists here in the Philippines found that Armel’s body produces stones inside his liver and bile ducts. Even with surgery, he has recurrent infections. Doctors are now telling us that Armel most likely suffers from Caroli disease, a rare disorder involving his bile ducts and liver. Caroli disease is so incredibly rare in the Philippines that only a few specialists are educated on the condition.
Quality health care is very expensive in the Philippines. We are lucky to have employment and basic medical coverage, otherwise, Armel ultimately would have died without proper care. Armel is the first person in his family to finish college. He and I are employees with very little family in the city, and being poor, his family relies on him for support.
Doctors have concluded Armel will eventually need a liver transplant. It’s something that’s very expensive in our country and not many surgeries have been attempted here. In the Philippines, a liver transplant is equivalent to being given a death sentence. At the rate we are earning, it would take us over 20 years to save for a transplant.
We have accepted Armel’s disease, and are planning our life with his condition in mind. We are not going to let his condition make us unhappy or fearful. We do want to know more about this disease, whether it is genetic and whether it will be inherited if we have our own children. Armel’s father is Danish but he hasn’t seen him since he was eight.
Armel is such a fun loving and happy person. We are not going to give up on fighting this disease ever. With hope, we will set up a resource site or movement here in the Philippines for rare and genetic diseases.