Video: Calhoun City Woman Fighting Rare Disease

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CALHOUN CITY, Miss. (WCBI) – There is nothing more frustrating than being sick and having no idea why. Rare diseases affect 30 million Americans. Forty-four year old Kathy McRight is one of only 25,000 people in the United States who suffer from Primary Ciliary Dyskinesia or PCD. It’s a genetic disease that leaves her respiratory system unprotected from infection. She was born with pneumonia and since then, she’s been hospitalized 65 times. McRight is unable to work or do every day things with her family.

“At 17 I was just diagnosed as being a book case. They didn’t know what was wrong with me. I miss out on Sunday School classes and things, and activities out, because I have to stay away from people because of being sick,” says McRight.

“Normal family activities are rare. We enjoy the good days that we have, even if we’re not able to go out and do anything. We just enjoy each other here when we feel good and we’re not in the hospital. We count that as a blessing,” says Stephen McRight, Kathy’s husband.

McRight has to be in a temperature-controlled environment to stay healthy. She uses specialized machines to help keep her respiratory system functioning. Though McRight suffers from PCD, she says her mission is to bring awareness to the fight against all rare diseases.

“Rare disease is so very important because of the lack of funding and not getting the funding we need to get the research done to find a cure for these diseases. There’s no cure for PCD. There’s not even a treatment regiment for PCD,” says McRight.

McRight is not alone on her mission. Actor Johnnie Lee Right from CBS’s Elementary will speak to a Congressional Caucus this week on behalf of those who suffer from rare diseases. People who suffer from PCD are only expected to live until about age 47, but McRight says she’s going to keep fighting for her life and fighting to find a cure.

If you’d like more information about rare diseases or want to know how you can support the cause, go to www.rarediseases.org.