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Rare diseases and misdiagnosis

When Ohio patients go to a doctor with a list of symptoms, the chances that they have a particular rare disease are very low. However, there are more than 7,000 rare diseases, and current data indicates that there are over 30 million people in the U.S. who suffer from at least one of them. The National Institutes of Health classifies a disease as 'rare" if less than 1 in 200,000 people in the U.S. have it.

Rare diseases like Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia are not widely understood by doctors. Because many of the symptoms of rare diseases can mimic the symptoms of more common conditions, doctors frequently misdiagnose them. Even when a doctor correctly diagnoses a patient with a rare disease, the doctor may lack the knowledge to continue treating the patient effectively.

Receiving a diagnosis of a rare disease can take a long time, and obtaining appropriate treatment can take even longer. After getting a diagnosis, patients with rare diseases are often dismissed by their primary care doctors and forced to search for a doctor who specializes in their disease. Because rare disease specialists are rare themselves, they typically have long waiting lists.

Patients who are finally diagnosed with a rare disease may have been previously harmed by a misdiagnosis, such as by going through unnecessary and expensive treatment regimens for a disease that they did not actually have and suffering a worsened medical condition. They may want to meet with a medical malpractice attorney in order to see what recourse may be available to them in terms of seeking compensation for their losses.

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