7 Incredibly brave people living with rare diseases | oneFAPvoice

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7 Incredibly brave people living with rare diseases


Living with a rare disease can be a lonely experience. There aren’t the same resources available, or enough awareness about the difficulties they face. These brave people might make up a small percentage of the population, but they deserve huge recognition.

Which is why ostomates in our community inspire us; they overcome almost impossible daily challenges to prove how much can be accomplished despite limitations. Here are seven incredible survivors living with illnesses you probably never heard of.

One of Chelsea’s biggest challenges is finding a doctor in Ohio who specializes in FAP. So instead of office visits, she meets with her physicians via phone and Skype. Every year, Chelsea has a colonoscopy to check if FAP has spread to other areas of her gastrointestinal tract. She also faces dietary challenges that vary from day-to-day.

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