In 2006, the summer before my junior year of college, I was suddenly really sick – in pain, lethargic, and gaining 2 pounds of water weight a day. A slew of tests pointed to a problem with my liver, and many more tests, biopsies, and doctors visits later, I was diagnosed with cirrhosis and Wilson’s Disease. I was incredibly lucky in many ways. I lived in Boston, with one of the few hepatologists who actually had other Wilson’s patients and therefore knew what he was looking for (even though it was one of the last things he tried). I responded quickly to trientine, so the immediate discomfort from hepatitis and bloating dissipated rapidly. The disease had presented entirely in my liver, which can (and has) healed. And I’ve always had access to school or employer-provided health insurance, making medicine that would otherwise cost $20k a month affordable.

Thirteen years after my diagnosis, I gave birth to a happy, healthy baby boy. Having Wilson’s Disease created a ton of uncertainty around the pregnancy – from whether I was fertile, to how low a dosage of medicine was safe for me and the fetus, to whether my body would withstand the challenge. I did end up having to be induced at 37 weeks, but my liver function has returned to pre-pregnancy levels and my little one is completely healthy (and is only a carrier!).

If it’s caught early and treated, Wilson’s Disease isn’t a death sentence. But that requires people knowing about the disease and being able to access and afford medication. And as my experience with pregnancy has shown, there is still so much that we don’t know about the disease.

All donations are used to fund the Patient Registry Research Project for Wilson Disease.  The Wilson Disease Association is a 501 c (c) organization in the United States.