Friday was Rare Disease Day, a day that raises awareness about rare diseases and their impact on patients' lives.
NBCRightNow.com - Friday was Rare Disease Day, a day that raises awareness about rare diseases and their impact on patients' lives.
For Andrea Luther of Richland, simple things that our bodies can cope with like being outside in the heat or dealing with stress can turn dangerous and even deadly. The mother of two says she has her good days and her not so great ones.
"I can have this disease and have a good attitude or I can have this disease and have a bad attitude, but either way I have this disease."
Luther has Mastocytosis. Luther get's horribly painful rashes just from being outside when it is hot. She frequents the emergency room when her throat swells up, sending her into shock and nearly choking her.
"When I finally got my diagnosis it was such a relief." Fewer than 200,000 Americans have the disease, which makes it rare. Combined, nearly 30 million Americans have some type of rare disease.
"When I was originally diagnosed I went out to the Internet and I read something like, your prognosis is 15-20 years. I was like, 'oh no, what have I done?' because I had kids before being diagnosed."
Luther does not suffer from a fatal form of Mastocytosis. As far as she knows her two kids don't have it either. She said it was relief to know she would be able to live long enough to see grand kids if she stays healthy.
"I am grateful that it's only me that I'm doing it for, because it would be a whole different thing to have to do it for your kids."
Luther tells her story online. She has a blog where she jots down the good and the bad times. She says, while it may be easier to be quiet and just deal with it, she would rather make some noise where it counts.
"I have every intention of sticking around and seeing this disease cured, because there's no reason for this disease to stick around."
Last year for rare disease day, Luther was in Washington D.C. for rallies to raise awareness and to meet others with rare conditions. She tells us that with the support of other families coping with disease and the helpful friends she has in the Tri-Cities, she pushes through and just tries to be the best mom she can be.