Hospital admission

Like anyone else, people with Lesch-Nyhan disease may need to go into the hospital. They may need treatment for an infection, a kidney stone, or something else. Hospitals are especially difficult places for Lesch-Nyhan disease, so they should be used only when absolutely necessary.

There are several reasons that hospitals are difficult places for Lesch-Nyhan disease. The first is that hospitals frighten people. Children and even adults with Lesch-Nyhan disease can become scared and anxious, and their behavior and neuromotor disability worsen. These problems make it more difficult for the doctors to treat them.

Another difficulty is that Lesch-Nyhan disease is rare, so very few doctors or nurses have experience with their special needs. The doctors and nurses become anxious too, and they may become uncomfortable treating them. Patients with Lesch-Nyhan disease are very good at detecting this anxiety in the hospital staff, and this may make everything worse.

Another reason that hospitals can be difficult places for Lesch-Nyhan disease relates to self-injury. Virtually all people with Lesch-Nyhan disease need some type of physical device to protect them from injuring themselves, especially when they are anxious or upset, like being in a hospital. These protective devices resemble restraints, which are subject to strict limits in most hospitals. In many countries including America, there are laws which prohibit doctors and nurses from using restraints for most patients. The need for an assistive protective device to prevent self-injury clashes with the laws that prevent the use of restraints. In some cases, doctors and nurses try to remove the "restraints" to conform with the laws, despite the pleas by parents and even patient to permit them. If the medical personnel prevail, disaster may ensue in the form of serious self-injury.

Specialists who manage people with Lesch-Nyhan disease consider it medically unwise and unethical to deny protective devices for a special disability, even if they resemble restraints.

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