For the past eight years, Constantin Langa (now 35 years old) has been struggling with Wilson Disease (WD). Constantin's symptoms started when his son Traian was only 3 months old (he is eight now!), and his wife, Nichole, were just learning how to be parents. With their "never give up" attitude, however, Constantin and his wife were blessed with the birth of their second child, a beautiful healthy girl, named Adina in April of this year.
Some of Constantin's first symptoms included excess saliva, toe and hand cramps, tongue and body tremors, dystonia, slurred speech, and balance loss. It took him and his family 6 months from the start of his serious symptoms to get a diagnosis. By many measures though, they consider themselves very fortunate to have gotten a diagnosis within that timeframe, especially when others in the WD community were wrongly diagnosed or took even longer to get a diagnosis. It was a very traumatic period for his family, as Constantin, a healthy and successful man, was falling apart, and his wife was taking care of a new baby.
Part of the reason Constantin is a survivor is that he was diagnosed "early" enough to catch the fatal onset of the disease (although genetic testing at birth would have been the most ideal solution). However, getting a diagnosis was no easy matter. His family ran from doctor to doctor, and every time the doctors were either baffled, told them what Constantin didn't have, or they were provided with a wrong diagnosis. The first diagnosis they received was anxiety and depression, but they never gave up searching for answers because that just didn't seem correct. His family knew that there was something more going on. It wasn't until he took an MRI, and the neurologist saw the "panda face" that Constantin was finally on the path toward a diagnosis. The MRI, plus lab and genetic testing, and the discovery of Kayser-Fleischer Rings in his eyes solidified the diagnosis.
Over this period of about 6 to 8 months, the neurological manifestations of WD took Constantin suddenly from a very healthy, active lifestyle and holding a full-time job in Washington, D.C. to completely debilitating neurological effects of not being able to perform any basic function without assistance. Constantin's symptoms greatly worsened 3 weeks following the start of the chelation therapy medication. The doctors tried to save his liver by getting as much copper out of his body as quickly as possible. As a result, his neurological system was compromised.
Eight years into this WD journey, daily life is still a struggle and Constantin still requires regular assistance from caregivers and family. However, his determination to get better means he attends regular therapy (aquatic, modified yoga, neurofeedback, acupuncture, acupressure, speech, etc.) and his many bumps, cuts and bruises are marks of him pushing his limits to overcome. Even these many years later, they are defying the odds and continue to see improvements.
Our hope is to raise awareness for WD, so that we can prevent future generations from the same devastating situation. Early diagnosis and treatment is the key!