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'IT'S VERY SERIOUS': Cordova woman diagnosed with TTP wants to raise awareness about the rare blood disorder

By DIONNE GLEATON, T&D Staff WriterTuesday, June 03, 2008

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CORDOVA -- Vomiting, diarrhea, fatigue and aching muscles led Cordova resident Stacy Cleckley to think that all she had was a bad case of the flu, but the formation of bruises and red "pin dots" all over her body told her differently.

The 33-year-old knew something was wrong and went to the doctor to see what was going on.

She had no idea that her platelet count had dropped to a dangerously low level of 12,000 when, in normal circumstances, a healthy individual's platelet count ranges from 150,000 to 450,000. A rare, life-threatening disorder was soon found to be attacking her platelets.

She had not been on her job at Zeus Industries, or in her new home, very long before she became sick with thrombotic thrombocytopenic purpura, or TTP. It is a condition that occurs when small blood clots suddenly form throughout the body, using up large numbers of platelets.

She has since been forced to stop work, has no insurance and, on top of that, the prednisone prescribed to help her fight the disorder caused her to develop diabetes.

"I was on a very high dosage of prednisone," Cleckley said. "My doctor calls it a mixed blessing because it helped save my life, but it also caused a lot of other problems. I developed diabetes. ... I have to take insulin shots four times a day.

"I started losing my eyesight. I had arthritis in my neck and spine. It causes your bones and muscles to ache really bad. I had weight gain, and then you have this thing they call a 'moon face.'"

"It's been a journey," said Cleckley, who is part of an online TTP support group and is now dedicating her efforts to developing a foundation.

She will never forget when she was diagnosed during her first trip to the doctor.

"Dr. Angela Hampton of Singleton Health Center first diagnosed me. I was sick that weekend of June 17 (2007)," Cleckley said. "For some reason, the antibodies in my body starting fighting my platelets ... and made them drop. They thought they were harmful and weren't supposed to be there. You need platelets in your body to form clots because if you were to get cut, you could bleed to death or have internal bleeding."

"It's very serious," she said of TTP. "My doctor came in the room and was like, 'Oh my goodness.' She looked at my arm, and I was like, 'I don't know what's going on.' I was telling her how I was feeling, and she got to flipping in her book. She immediately knew what it was. She said, 'I think you have TTP.'"

Cleckley was immediately referred to the Mabry Cancer Center on the campus of the Regional Medical Center, where she received 12 units of blood plasma in three hours.

"I received over 200 units of plasma throughout the whole process," said Cleckley, who also underwent chemotherapy as part of her treatment for a disorder her doctor said appears to be genetic.

"Just looking at my blood work and everything, she believes it was genetic. I have an aunt who had ITP (immune thrombocytopenic purpura), the lesser version of TTP," said Cleckley, who has been taken off prednisone and chemotherapy. "My dad had a blood disorder. He passed away in August of 2007. His disorder was the very opposite of mine. His blood was really thick, and they (doctors) would have to take blood from him every six months."

"Right now, I go every week to check my platelets. So far, it's looking pretty good," she said. "Getting this disorder turned my life upside down. I had just starting working at Zeus. I had been there exactly two years June 14 (2007), and I got sick on the 19th. I've been out of work since then. They (Zeus) give you, like, six months to try to get better. So, I'm not working, and the insurance stopped once my six months ran out."

The mother of one said her 15-year-old daughter, Ciara, has been a blessing during this difficult time.

"Since I had her, she's been my motivation to really make something out of myself," Cleckley said. "That's why I'm here."

Cleckley said she is also grateful for her former employer because they held a blood drive in her name.

"I never thought I would be in this position to even need plasma," she said. "So, I'm so grateful to all the donors and everybody who've given blood and plasma. I wouldn't be here without it. I'm still trying to maintain, but it's really hard."

"Some people can just have TTP one time, or they can relapse a couple of times. It just depends," said Cleckley, who, unlike some TTP patients, has not had a stroke, been in a coma or had to stay in an intensive care unit for months. "I'm part of a TTP group ... and some people relapse more than seven times. I'm actually kind of lucky. That's why I thank God for Dr. Brunson and Dr. Hampton."

She said she has, however, almost given up on the thought of having more children.

"From what I've read, it's kinda dangerous to get pregnant because you could relapse," Cleckley said. "I also have hyperthyroidism, so that's very dangerous, too, when it comes to having kids. With the prednisone and everything, it caused my thyroids to get out of whack. I may have to have radiation, too. They wanted to take my thyroids out, but I can't because of my TTP. It's too risky."

She said she is hoping her foundation will be a source of support and inspiration for others suffering from TTP.

"I wanted to let people know more about the disease because they don't really know anything about it. It's so rare," she said. "That's something that I want to try to work towards or build upon. They have one in Canada. I don't believe we have one here in the U.S. I've been doing a lot of researching and talking with other members of my support group."

For more information on TTP or Cleckley's foundation efforts, contact Cleckley by phone at 803-387-6000 or mail at P.O. Box 323, Cordova, SC 29039. For more information about becoming a blood donor, call 1-800-GIVE LIFE or visit DonateBloodToday.org.

T&D Staff Writer Dionne Gleaton can be reached by e-mail at dgleaton@timesanddemocrat.com or by telephone at 803-533-5534. Discuss this and other stories online at TheTandD.com.

 
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When Stacy Cleckley began suffering from vomiting, diarrhea, fatigue and aching muscles, she thought it was the flu. But the mother of one found out in June 2007 that she was sick with the rare blood disorder thrombotic thrombocytopenic purpura, or TTP. She is now working on starting a foundation to support and educate others about the disease. (Dionne Gleaton/T&D)

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