Word: esthesioneuroblastoma
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Dates: during 2000-2009
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...Doctors with intimate knowledge of the case tell TIME that though extremely rare, the esthesioneuroblastoma disease Sébire suffered from is now routinely controlled through early detection and surgical removal of the tumors from the nasal vault. Through such operations, specialists say, patients typically go on to lead relatively normal lives. Yet after the disease was diagnosed as the cause of her repeated nose bleeds in 2002, Sébire rejected proposals of surgical intervention - and subsequently turned down the palliative services and pain-masking medication doctors offered. It was only after her tumors had grown too large...
...bire came to national attention earlier this month, when French media picked up on her plea to get help ending her life. Her malady, esthesioneuroblastoma, causes inoperable tumors to grow in and spread from the nasal passages, disfiguring and destroying the face before finally destroying the brain. The disease had already blinded and otherwise handicapped Sébire, and left her wracked with pain for hours on end despite medication to allay her suffering. Sebire explained her request for medically assisted suicide saying she wanted to leave the world following an evening of celebration with her three children - and avoid...
...however, there are also limits to how much personal conviction a president can translate into public policy. On Wednesday, Sarkozy responded to Sebire's appeal by offering to convene a panel of specialists to see if all possible means have been exhausted in treating her rare disease, known as esthesioneuroblastoma. On Thursday, Sebire declined that offer, explaining the advancing tumors have left her blind and otherwise disabled, and that movement beyond her home involved considerable effort and assistance...
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