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Amanda's Story...


Rare Disease Plagues Heartland Woman, Stumps Docs

Imagine being sick for five years, going to different doctors, all of them telling you stress was the reason for your problems. But the whole time, you didn't feel any better, because you had a very rare disease. It was a nightmare Amanda Riley of Blodgett went through. The nightmare started when she was just 18-years-old, and ended just a few years ago, when one doctor diagnosed her with a rare disease called Cushing's.

Amanda says, "I knew something was wrong. I knew I wasn't overeating, I was active, I was cheerleading." As a high school senior, Amanda had her future planned out. After graduation, she was going to nursing school. What she didn't plan for ended up taking over her life. "I started getting headaches, and I was having night sweats, so I knew something was wrong," Amanda says.

That was just the beginning for Amanda and her family. In a little over a year, she gained 100 pounds, and her health got worse. She went to several doctors, all of them gave her a different diagnosis; stress, diabetes, polycystic ovarian syndrome. The whole time, Amanda's health was getting worse, her blood pressure was high and she was having stroke like symptoms. Finally, she and her family went to Little Rock, Arkansas where a doctor diagnosed her with Cushing's Disease. "When he told me I had it I was excited," Amanda says. "I know that sounds kind of weird but I was excited because someone told me there was something wrong with me. I wasn't just crazy and stressed out." Her mom Gail says, "After you go to over 11 doctors in five years time, you can't believe you finally find out she does have something."

There was a tumor on Amanda's pituitary gland, that was producing too much of the hormone cortisol in her body, that was causing her weight gain and other serious health problems. In November of 99, she had the tumor removed. Now, over two years later, Amanda's nightmare is over, and her life is getting back on track. Her mom says, "She's going to get married in April. It feels good to have her back to normal."

There is always the chance that Amanda's tumor may come back. She says she's not worried about it, because she's confident the doctors will be able to take care of it again.

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