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Rare diseases and medical malpractice

Patients who suffer from rare diseases in Illinois may wait longer to get a correct diagnosis and proper treatment because the symptoms of these conditions often mimic signs and symptoms of more common illnesses. Failure to diagnose a condition can be a form of medical malpractice.

In the U.S., a disease is considered rare if it affects less than 200,000 individuals per year. It is estimated that more than 50 percent of those suffering from rare diseases are children.

Patients with rare diseases often face difficulties when seeking adequate treatment even after receiving a correct diagnosis. Many rare diseases are less studied than more common conditions, so there may be fewer effective treatments available.

Rare diseases are sometimes diagnosed at later stages than more common conditions, often when they have reached a stage that makes the condition less treatable. According to one study of 6,000 patients with rare diseases, it took between 5 and 30 years for 25 percent of those surveyed to receive a correct diagnosis. Many rare diseases are forms of cancer such as mesothelioma, a form of lung cancer that may cause no symptoms for many years.

Failure to correctly diagnose a disease may be considered a form of medical malpractice. Medical malpractice cases can be expensive to litigate and require testimony from an expert witness about what a medical provider did wrong. An attorney may be able to help pinpoint what went wrong and make arguments about why a medical professional was negligent.

For example, an attorney may be able to offer into evidence expert testimony about how standard testing would have helped diagnose a rare condition and demonstrate how failure to diagnose may have led to ineffective treatment. Professionals in specialty fields such as oncology may be held to a higher standard regarding making a correct diagnosis of some conditions than general practitioners.