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Rare Disease Day highlights struggles of delayed diagnosis

Many Americans suffer from diseases that are uncommon and unfamiliar to the public. People who suffer from rare diseases often struggle with treating their disease due to the difficulty in diagnosing their disorder as well as finding approved treatments. 

Rare diseases can be very difficult to live with. Feb. 28 is Rare Disease Day, and advocates hope the day will help raise awareness to rare diseases and people living with rare diseases throughout the world. What is a rare disease? When fewer than 200,000 people are diagnosed with a medical condition in the United States. 

Living with a rare disease can be very challenging. Many people aren't diagnosed with a rare disease for several years due to the variety of symptoms each patient has, and many doctors are unfamiliar with lesser-known diseases so it usually takes longer to diagnose rare diseases. Waiting for a diagnosis can make it difficult for people to apply for Social Security Disability benefits. However, many people do end up with a diagnosis, it just takes longer compared to patients with other types of medical conditions. 

After being diagnosed, many people struggle to find treatments that help alleviate their symptoms. Part of this problem is caused by some rare diseases not having any treatments approved by the Food and Drug Administration, which means insurance companies are less likely to cover treatments. 

Living with a rare disease can be challenging for many reasons, but those living with a rare disease should know that they are not alone. Even though it may seem like many people don't understand what they are going through, there are other people in the U.S. suffering from similar rare diseases and probably know exactly how you feel. 

Americans should become more familiar with rare diseases and the number of people living with a rare disease. That is the goal of Rare Disease Day later this week. Advocates and people living with rare diseases hope the public will be more understanding and accepting of people diagnosed with a rare disease.

Source: Prescott Valley Tribune, "Difficult to diagnose disorders gain support," Sue Tone, Feb. 19, 2014

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