Meet Nina Sadler
A Type 1 Diabetes diagnosis at the age of seven was the gateway for Nina Sadler to find out not only was her pancreas going to cause her lifelong issues but so was another vital organ, her liver. Within 3 years of one diagnosis she received another, that being Wilson’s disease.
Nina was adopted as an infant from South Korea by her parents who lived in Salem, Oregon, where she was joined by two brothers who were also adopted from South Korea. As a child and teen Nina lived as normal of a life as she could. She stayed very active in school, sports and extracurriculars. Although Nina had her own struggles in life she was able to still find time to create more good in this world and give back through local community service projects and organizations.
After Nina’s diabetes diagnosis, it was revealed that she had elevated liver function test results. This was something she was told would return to normal once her diabetes was under control, it never did. Nina mentions “my wonderful mother, who is the strongest advocate for my medical care, repeatedly asked the doctor to follow up”, and doing so they were able to catch this rare disease well before it took full control of Nina’s life.
Wilson’s disease is an incredibly rare disease for two main reasons. It is a genetic disease and difficult to diagnose. Wilson’s disease causes your liver to not be able to filter out copper taken in through your daily diet. Since it cannot get rid of the copper through normal processes it instead stores the copper in your vital organs, particularly the liver and brain. Symptoms often replicate those of Parkinson’s disease and thus this is often misdiagnosed.
Some of Nina’s symptoms have since progressed over the years which has now put Nina up for a liver transplant that will ideally cure her. Some of the daily symptoms Nina endures include uncontrolled movements, muscle stiffness, walking/gait issues, speech issues, lack of physical coordination, fatigue, lack of appetite, nausea, decrease in cognitive function, and psychological problems. These symptoms have caused Nina damage to both her liver and brainstem which may be irreversible.
Nina shared that this “has severely impacted my daily life; I cannot drive anymore which has decreased my ability to be independent. The psychological issues have taken a toll on both my mental health and my personal relationships. I can no longer enjoy a lot of what I used to due to lack of energy and dietary restrictions.” Through all of this she remains positive, “I am currently taking it one day at a time. I have my good days and bad days but remain hopeful on all days.”
While Wilson’s disease is extremely rare there fortunately are a few treatment options, albeit they are limited and extremely expensive. Nina currently takes medication that manages her copper accumulation. This costs $25,000 per month without insurance. Fortunately Nina has great insurance through her full time job that helps her with this. With the combination of the medications for Wilson’s disease and Diabetes along with doctor’s appointments Nina and her bank account take a massive toll.
Nina is hoping to take a step back from some treatments and numerous doctor appointments in the near future, as she was recently approved for a liver transplant! Once she receives final approval from insurance she will be listed. Her transplant team will then submit an exception request to UNOS (United Network for Organ Sharing) to prioritize Nina and her surgery. If all goes to plan Nina could get herself a good spot on the transplant list by the end of June and be using a new liver by the end of the summer or early fall. With any transplant though there is so much uncertainty as there are so many deciding factors including list rank, size of the liver of the donor, and the blood type (Nina happens to contain the second rarest type of blood, AB).
Nearing the age of thirty, Nina mentions, “I look forward to my life post-transplant and I genuinely look forward to the new lease on life and plan to live it to the fullest!” She remains hopeful and wants others to know to “never stop advocating for your medical care, take care of your body, and be kind to yourself. Give yourself grace and the rest will follow suit.”
