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Wilson's Disease is an inherited and rare disease that affects the brain, liver, and other important parts of the body. Our bodies use copper absorbed from food to develop healthy nerves, bones, collagen, and melanin, which is a skin pigment. The excess copper that is absorbed is digested by a substance produced by the liver called bile. However, Wilson's disease causes excess copper accumulates throughout the body instead of digesting. This is why Wilson's disease is so important to be caught early, if not it could be deadly.

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Wilson's disease not only affects the body on the inside, but it also affects the outside. Some of the side effects include golden rings around the eyes, fluid build-up in the legs and/or abdomen, problems with speech, swallowing, physical coordination, and jaundice, (yellowing of the skin).  This makes eating, getting dressed, communication, and everyday life a constant struggle.

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Wilson's disease is a genetic disease that must be passed on by both parents, even if the parents seem to be perfectly fine. The gene affected by this is called ATP7B. This gene alters the function of protein in the body. Once the gene is passed on chromosome 13 transports ATP7B and the child has a chance of getting Wilson's disease or just carrying the gene for the next generation.

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Unfortunately, even though people suffer tremendously from Wilson's disease, there aren't many accommodations for people with this disease. The one accommodation for this disease is disability benefits. This means that he or she, whoever has this disease, can get a monthly payment to cover normal everyday expenses if they can't work due to the illness.

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Wilson's disease usually develops within 12-23 years of life. It is important to make sure the disease it caught in early stages because if it is left untreated for too long a person is only expected to live 40 years or less. If treated, there is a much greater chance of overcoming the disease and living longer, though it is yet to be determined how much longer, for every person is different.

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Wilson's disease is an extremely rare genetic disease. Under 20,000 people a year get diagnosed in the U.S. 1 in 40,000 people are expected to contract the disease worldwide, and 1 in 90 people are expected to contract the disease on average. This may seem like a lot, but there are 7.9 billion people in the world, and only 1 in 40,000 are expected to contract the disease. This means that under 17000 people a year worldwide will contract this disease. Out of those 17000 people, 72% of them are expected to survive at least 20 years longer.

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Anonymous 31 year old from Scotland was diagnosed with Wilson's disease. Her first symptom was in 2015 when her leg went temporarily numb. She went in for an MRI (magnetic examination) and lumbar puncture (taking fluid from the spine with a hollow needle). In 2016 her leg went numb again. The doctors thought she had sclerosis (stiffening of tissue). Once again the numbness disappeared and no tests were repeated. In 2017 she had 3 miscarriages which resulted in her being admitted to the hospital. She was referred to the mental health team where she was put on medication. A few months later a tremor started in her left arm and quickly spread to the arm. From legs to head. When she would go to stand up she had poor balance and coordination. It was harder for her to eat and drive due to the tremor. In April of 2018, she became very emotionally low. Her medication didn't seem to be working even though she's been on it for a year. Soon she was doing CBT (Cognitive Behavioural Therapy). Often trying chiropractor, acupuncture, and healing treatments. In July of 2018, she was finally offered a CT scan. The results showed no abnormality and were diagnosed with FND (Functional Neurological Disorder). In January of 2019, a neurologist noticed the hand tremors and thought that she had Wilson's disease. A GP said to get blood work done but it was extremely rare she would have Wilson's disease. The result was so low they thought there was an error. She couldn't do anything alone her arm eventually gave out and she had to have people shower and dress her. Restless nights would keep her awake and the pain in her working arm worsened. She had a tube put into her nose and down her stomach to feed her medication and food. In February 2020 she was able to start driving and voluntary working in public schools. again

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Unfortunately, there is no cure for Wilson's disease. Although, there is a treatment that could potentially help a patient live longer. The two most common treatments for this disease include Penicillamine and Trientine. Penicillamine works by bonding to the excess copper in the system and exits the body through urination. Trientine works by combining with the excess copper in the body and potentially prevents your body from absorbing the copper. Of course, though, there are side effects. Side effects of Penicillamine include upset stomach and pain, itchy skin, rashes, nausea, loss of taste, loss of appetite, and diarrhea. Side effects of trientine include muscle pain, muscle weakness, drooping eyelids, and double vision. Although these side effects seem terribly uncomfortable, they may be worth the risk of living 20 years longer.

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Dr. Sruthi M., MBBS. “What Is the Life Expectancy of a Person with Wilson's Disease?” MedicineNet, MedicineNet, 2 Dec. 2021, https://www.medicinenet.com/life_expectancy_of_a_person_with_wilsons_disease/article.htm.

“Treatment.” National Institute of Diabetes and Digestive and Kidney Diseases, U.S. Department of Health and Human Services, https://www.niddk.nih.gov/health-information/liver-disease/wilson-disease/treatment#:~:text=Penicillamine%20link%20(Cupramine%2C%20Depen),cause%20side%20effects%20than%20trientine.

“Wilson Disease.” NORD (National Organization for Rare Disorders), 7 Mar. 2018, https://rarediseases.org/rare-diseases/wilson-disease/#:~:text=Although%20estimates%20vary%2C%20it%20is,carriers%20of%20the%20disease%20gene.