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Epilepsy patient priorities: Diagnosis, treatment and quality of life

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    People with epilepsy are concerned about the diagnosis of the disease, treatment options and how to improve their quality of life. These were some of the themes that came through during an epilepsy ‘call-in’ organised by UCB in Germany.

    The initiative gave the public an opportunity to put their questions to Dr Lothar Burghaus, Doctor of Neurology and Chief Physician at the Heilig-Geist Hospital in Cologne, and Anja Daniel-Zeipelt, UCB patient ambassador and author of several books on epilepsy.

    As a patient advocate, Anja was able to empathise with callers and share experiences while Dr Burghaus provided answers to more complex medical questions. Both offered valuable advice on how best to manage epilepsy.

    Each caller was given time to ask about issues that matter to them and their family. The average call time was around 11 minutes and, in total, the two experts provided seven hours of counselling.

    In addition to questions about diagnosis and treatment, there were queries about how to react in cases where a patient has had a seizure. Several callers referred to a UCB-supported epilepsy site in Germany which enables them to search for doctors or ask questions.

    The phone-in session had been promoted in the German media in advance and several newspapers followed up with reports after the event. This helped to increase public awareness of epilepsy and reduce the stigma that can sometimes be associated with the disease.

    UCB has previously organised a similar phone-in event for people with Parkinson’s disease and the format appears to be popular with patients and the general public alike.

    This is just one of the many ways in which we can provide a service to the patient communities with which we work.

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