The disease was first described by the British neurologist Dr. Samuel Alexander Kinnier Wilson (1878-1937) in 1912, and was first called Hepatico-lenticular degeneration, i.e. changes in liver and brain.
The Danish association for people with Wilson's disease was founded in june 1. 1990. It was Torben Grønnebæk who took the initiative, for he himself had been severely ill by the disease, which in his case meant that he was completely helpless and therefore needed assistance for everything. Only when another symptom free Wilson patient who had been hit as hard as he visited Torben, did he get his belief back that he would survive. He decided that if he could in any way help other patients to avoid a similar nightmare, he would. He did so through a patients Association where both patients and their families could meet and talk about their traumatic experiences as they waited for the diagnosis.
Over the years, the doctors managed to diagnose patients with Wilson's disease, so that treatment could be started early in life, so that the traumatic process could be avoided. In the year 2000 a Central Function for Wilson patients was established. This had been a great desire by Torben and fellow members.
Soon the focus shifted from focusing solely on its members' interests internally to also do it externally in collaboration with other small patient groups. Torben, who was a visionary person realized that although small is beautiful, many small streams lead to a much larger river. The Wilson’s Patient Association was enrolled in the umbrella organization KMS, now Rare Disorders (Sjældne Diagnoser), where there were other associations with genetic disorders. Here Torben was chairman for many years. It was very important to him that the doctors did not consider the members of the associations as “rare animals”, but that they were perceived as unique people.
Torben died peacefully on February 18th 2012, at the age of 58, after prolonged severe illness. It was lung cancer that put an end to his great energy and 22 years as chairman.
After the death of Torben, wilson patient Nina Tuxen stepped in as chairman of the Association, and worked with great energy, and across other organizations for rare diseases. Nina was Chairman from 2012 to 2014, where she resigned from the Board of Directors and as Chairman, to continue working in Rare Disorders. Lisbet Ottesen was elected as the new Chairman in 2014. Lisbet is the mother of a daughter who has the disease.
