Raising awareness about Wilson Disease

Sara Racine, shown here with her children, was very ill and with proper care has gone on to lead a very happy and successful life.

Sara Racine, shown here with her children, was very ill and with proper care has gone on to lead a very happy and successful life.

All of us need some copper to survive, however some people are born with a genetic disorder that eliminates the body’s ability to remove excess copper. This is called Wilson Disease and it affects about 1 in 30,000 people worldwide. If left untreated, copper levels can become dangerously high and cause severe tissue damage in the liver and brain. In some cases, it can be fatal.

Sara Racine, of North Branch, was born with Wilson Disease, but she did not know it until much later as a college student in her 20s.

“My primary doctor had been running some blood work on me for annual physicals, and my liver function levels were always elevated. I started not feeling well. I was tired all the time. I had no energy to really do the daily tasks of going to college. My doctor couldn’t really explain what was going on. My gallbladder had signs of not working well, so they thought that if I had it removed that I would be feeling better.

However, when it came time for the procedure to remove her gallbladder, Sara’s blood work showed that her liver function and enzymes were far from normal and the surgeon would not operate.

“By that time I was feeling defeated and upset because I just wanted to feel better. I remember feeling scared at that time because nobody knew what was going on with me and had no clue how to make it better. With my energy even more depleted, I had to drop out of school because I knew I wasn’t going to be able to function. I had no energy to do anything.” Continue reading

Supporting caregivers of patients with liver disease

Your needs are important too

Doctor and caregiverOne day last year, I walked into clinic to see a patient with end-stage liver disease. His health had been declining, with frequent admissions to the hospital for confusion and fluid overload. The patient was in the bathroom when I entered the room, so I stopped to ask his wife how things were going. She dutifully started listing his current medications, described his recent symptoms, and showed me a list of his daily weights.  Something about the frantic way she did this, made me stop and ask: “No, how are YOU doing?” Then she started to cry. Continue reading