Can you imagine losing your job and life savings due to an illness you could not control?
For more on Tanja’s story, and information to help her on the road to recovery and raising awareness, please visit
- Support a Wilson Disease Survivor by Tanja Cebic
Support a Wilson Disease Survivor by Tanja Cebic - Recovery support for a Wilson disease survivor “Wilson's disease is a rare inherited disorder that causes excessive amount of copper accumulated in a person’s liver, brain, kidneys, spleen and other
When diagnosed with Wilson’s disease, she was informed by medical professionals that this deadly illness could potentially cause the following symptoms:
- Neurological symptoms, which result from a toxic copper buildup in the brain and include:
- Memory Impairment
- Gait Disturbance
- Vision Impairment
- Symptoms caused by accumulations in liver or kidneys include:
- Kidney Dysfunction
- Jaundice (caused by liver failure)
- Cirrhosis of the liver
For almost seven years, doctors thought her conditions were related to cirrhosis of the liver, and medical insurance rejected the use of crucial medication for the disease, known as Syprine/Cuprimine (Valeant Pharmaceuticals). Not long after the insurance company rejected the use of medication, Tanja struggled to get back on her feet. Her insurance provider asked her to try Cuprimine (Pencillamine), knowing that this often makes neuropsychiatric symptoms worse for many patients. This would be true for Tanja as well. After the use of Cuprimine (Pencillamine), the medication made Tanja’s symptoms worse and forced her into wheelchair.
Tanja’s story is an inspiring one, which is why I wished to share her struggle, bravery and story with you. She came to the United States to study at Eastern Florida State College (formerly Brevard Community College) and Florida Tech University (Formerly FIT). She graduated Summa Cum Laude from Florida Institute of Technology. Tanja was sponsored by her childhood friend who grew up with her in war affected areas of Bosnia and Herzegovina.
From the day she arrived in the United States, Tanja had symptoms of anxiety. Initially doctors thought her anxiety and swelling of her legs were related to transitioning to new life at a University. The mystery illness would soon make her unable to walk straight and struggle to speak clearly.
In 2008, Tanja fainted during a doctor’s visit. She was taken to the New York City Lenox Hill Emergency Center. At the hospital, doctors diagnosed her with unknown causes or cryptogenic cirrhosis of the liver. Tanja was listed by the Liver Transplant Team in New York City in 2009. Soon after, her condition started to deteriorate rapidly. In 2014, Tanja started to develop severe neuropsychiatric problems, which ultimately led to the loss of her job.
When speaking to her about the experience, she goes on the say the following:
“By that point my symptoms got worse. I couldn't hold anything because my hands were shaking a lot, my legs would give way if I tried to stand, and I would be falling down, as well as my speech being slurred.”
That very next year, Tanja Cebic was diagnosed with Wilson's disease, a genetic disorder which caused a toxic overload of copper in her body, ultimately causing severe damage to her liver. The medical professional’s diagnosis came from the symptoms found in and around her eyes, called Kaiser Fleischer rings. It took nearly eight years to confirm a diagnosis.
Tanja was practically paralyzed, she could not do anything for herself. This 38-year-old was helpless and barely living. Her mother had to assist her to the bathroom, feed her, bathe her, dress her, and even clip her finger nails.
“I had to spend eight months in a wheelchair. It was absolute torture. If I didn't have such an amazing Mom and husband I wouldn't have gotten through it, my family has been incredible,” she states.
“When my symptoms were at their worst, I really struggled. It was so visible and impossible to hide. The slurred speech really got to me. I'm such a chatty, lively, bubbly person, but during this time I withdrew from people because I didn't want to hear how bad my voice had become,” Tanja went on to say.
Tanja Cebic is now on medication to keep her symptoms under control, and she has responded well to treatment. Had Tanja been properly diagnosed back in 2009, she may have not had to go through such agony and crippling loss. Tanja was hospitalized for almost three months within the past year. She spent weeks in rehabilitation facilities and in-house rehabilitation, which cost her obscene amounts of money.
During her road to recovery, Tanja has shown great courage and ability to perform some simple daily tasks. In January, Tanja’s family wasn't sure if Tanja would be able to walk in May, but she began to turn a corner not long after she came home. By April, she was much better and well on her way to recovery, ultimately able to walk six weeks later. Her family has witnessed one of the fastest turnarounds they have ever seen. She is not out of the woods yet, but she has done a great job and has made excellent progress.
Tanja’s story is one of bravery, heart, and determination. When speaking about what perspective this has given her on life and purpose, she sates the following:
“I want to raise awareness of Wilson's disease, because so few people have heard of it - even medical professionals. People shouldn't judge a book by its cover - on the surface I might have looked neuropsychiatric, but there is always more to it than what people initially see.”
MORE INFORMATION ON WILSON'S DISEASE:
- A disorder where patients have a higher than normal amount of copper in body
- An overload of copper is poisonous and can damage liver, brain and other organs
- The overload is caused by a genetic defect that prevents the liver from being able to metabolize, and remove large amounts of copper from the body as it normally would
- Copper taken in from eating is absorbed by the small intestine
- Normally, any copper the body doesn’t use is carried away by bile – a fluid produced by the liver to aid digestion – and excreted from the body.
- Biliary excretion is the only means of removing copper. When this is not working properly an accumulation (build-up) of copper in the body will follow.
- This accumulation of copper will lead to serious and possibly irreversible damage to the liver if not treated.
- Wilson Disease is estimated to affect one out of 30,000 people worldwide, and it occurs with about the same frequency in both men and women.
If Wilson’s disease is diagnosed early enough it can be effectively treated. When it is not treated, the disease is always fatal.
Source: British Liver Trust