Trina's Story:
It started off for what I assumed would be a normal day in August of 2002, but actually was nothing of the sort and turned out to be a day my life would change forever. I was visiting with my mother and brother, catching up and having a normal conversation, when suddenly my words began to slur and eventually I was unable to speak at all. There were no warnings or symptoms prior to
this day that would lead me to believe that something was seriously wrong and cause for alarm concerning my health or my ability to talk. My brother immediately rushed me to the Loyola’s emergency room, where I was admitted and over the course of several days was given every test and image screening, to try and make sense of what was going on with my body at 31 years old. Yes, I may have picked up a few pounds, maintained a not so healthy diet and exercise was not part of my routine, but why was my ability to have a normal conversation being hindered and why? I will be honest I was thrown, but knew in my heart that God was going to work this out. At the time Trinae was twelve and I was really concerned how she would hold up. She had never seen me sick other than a cold or a bad case of heartburn, which by the way had sent me to the ER before. So I was initially more concerned about her well-being than what I was about to endure. I figured I had made it through an emergency appendicitis at twelve and an emergency cesarean for the birth of my daughter, this too would pass and I would be fine, God willing. After several more months of additional testing and several visits to specialists my doctors had ruled out Multiple sclerosis and found through a series of blood test that I had an extremely high level of copper in my body, which is deadly and would be the root to my diagnosis and the cause of what was going on with my speech and my body. Not only had my speech been impaired but my equilibrium was off and at times would lose my balance and become unstable. At this point I’m praying and still not claiming anything. I will be alright… Right? I was diagnosed with a rare liver disease known as “Wilson’s Disease” and was told that my liver was severely damaged and would eventually need a liver transplant. When? Wilson's disease occurs when a genetic mutation leads to an accumulation of copper in your body and transported to the liver, which is damaging not only to the liver but eventually all organs if not treated. I went through another series of test and meetings with specialist; Neurologist, Urologist, Dietician, and Hepatologist and placed on the Organ Donor Transplant list. I remained on the list and for the first couple of years after being diagnosed tried as much as possible to continue my lifestyle as normal as possible with the exception of more doctor appointments, meds, some stipulations and the worry or anticipation, if at all when or will my liver fail. Will I get a warning as I did with my speech impairment? There are so many things that go through your mind and if you are not careful it can consume like any other illness. Today, my family and I are blessed that with proper treatment, elimination of certain foods from my diet, and my commitment to doing my part to maintain the disease and not allow the disease to maintain me, my copper level has dropped tremendously and remains stable even today and no longer on the transplant list, which will allow others with immediate need for an organ transplant the opportunity to extend their life with hopes of finding a donor. The reality is I will be among those awaiting a donor one day and want to contribute to raising awareness in hopes of increasing organ donation. Sign Up Today!
