The World Health Organization reports that rare diseases affect 400 million people throughout the world. A West Virginia resident might be considered to have a rare disease if fewer than 200,000 people in the United States are affected by the same disease. There are no treatment options for most rare diseases, and for others, diagnosis comes so late that treatment may be far less effective.
One reason a disease may go undiagnosed is because it is symptomless. This is the case with gallbladder disease. A rare disease might also be misdiagnosed because of symptoms that are common to a wide variety of illnesses. This may happen with mesothelioma, a type of cancer with early-stage symptoms, such as chest pain and shortness of breath, that may also indicate pneumonia, asthma or just a cold.
Half of all people diagnosed with rare diseases are children, and rare diseases often receive less research funding than other types of diseases. About one-quarter of respondents in a survey of 6,000 people said it took at least five and as long as 30 years to get a diagnosis for their rare disease. People might increase the likelihood that their disease will be diagnosed if they note any symptoms and make sure doctors are aware of them.
In some cases, a delayed diagnosis or misdiagnosis might be the result of medical malpractice. A successful medical malpractice suit must demonstrate that the patient did not receive a reasonable standard of care and was harmed. The former means that the actions of the medical professional will be placed in the context of what could be reasonably expected of most medical professionals.