My husband, Mike and I met through mutal friends and were together for seven years before we got married. The two of us never thought that our wedding vows would be put to the test early in our life together.
When we first met in 2000, I noticed that Mike was often hunched over and in apparent pain. He told me that he had abdominal pains since he was a child and that doctors had said that it could be Irritable Bowel Syndrome (IBS) but he still needed more tests to confirm it. In the meantime, the pain was getting worse and we knew that it had to be something more serious. In 2002, blood results showed that Mike’s billirubin was high and his ceruloplasmin was low and he was immediately referred to a liver specialist for further testing. After an eye examination, urine test, blood work and a liver biopsy, Mike was finally diagnosed at the age of 22 with Wilson disease.
We had never even heard of it before, so the first thing I did was a lot of research to find out what to expect and how this diagnosis might affect us both.
Wilson disease is a hereditary disease in which excessive amounts of copper accumulate in the body. The overload of copper has a toxic effect on several organs in the body – copper is first stored in the liver and once storage capacity is exhausted, copper can accumulate in the brain and cornea of the eye. If left untreated, Wilson disease can be fatal. Once the toxic copper is removed from the body, the patient must take action to prevent reaccumulation of copper in the body.
We both learned quickly that living with Wilson disease meant making significant lifestyle changes. One crucial change was in our eating habits.
There are so many restrictions such as no fried food, spicy food, pork, mushrooms or chocolate just to name a few. It can make it difficult when dining out with friends.
Eating certain foods can cause Mike to experience painful side effects so I have learned how to recognize when he was in pain and offer as much support as possible – whatever form that support might take. It might just mean staying by his side or simply making a cup of tea. Mike is always very appreciative of the care and attention.
Another ongoing challenge is both the physical and psychological changes that can occur with Wilson disease. In times of stress, Mike’s mood swings tested our coping skills. We’ve found that open communication is the best way of dealing with these situations. By understanding what he’s going through, I know not to take things personally. This has helped reduce some of the stress.
When your spouse has liver disease, the pledge to see each other “through sickness and health” takes on new meaning. Learning how the disease affects Mike has allowed me to cope and help him cope in the most positive way. We refused to let Wilson disease be a barrier in our relationship. We don’t look at it as a disease but a lifestyle change for a better life.
Knowing what it’s like to live with liver disease day-in and day-out, we are committed to doing what we can to support others through the Canadian Liver Foundation. We believe the work of the Canadian Liver Foundation is essential for our community not only do they fund important research projects, but they also provide great tools for people to use to better educate themselves on liver diseases and how some can be prevented.
We are proud to state that the Canadian Liver Foundation supported the research that eventually led to the discovery of the Wilson disease gene. Moving forward, more research is needed to find better treatments and hopefully a cure.
Our livers are so important and we need to protect it the best way we can. Let’s stay healthy!
– Momma Braga