Saturday, November 3, 2007 1:11 AM CDT
Charleston woman diagnosed with rare disease reaches out to help others
By DAWN SCHABBING, Features writer
dschabbing@jg-tc.com
During the fall of 2004, Jeff and Christina Parkison were newly married and had purchased a home in rural Charleston.
But move-in day was a blur to her, as she hadn’t been feeling well in recent months. The sickness had nearly overcome her by October that year.
“I think I’ve had symptoms for years, little by little. When we moved in to our new home in October 2004, I literally don’t remember unpacking anything. I guess I was on auto-pilot,” she said.
For many weeks she expressed respiratory symptoms, extreme tiredness, a purple-dotted rash that resembled blood blisters, general poor feeling of health, and joint pain. Specialists at Barnes Hospital in St. Louis diagnosed the rare condition, called Wegener’s granulomatosis.
It is a form of vasculitis, a disorder that causes inflammation in blood vessels and affects various organs, including lungs, upper respiratory and kidneys.
The condition is believed to affect about one in 1 million people. Caucasians are most likely to contract it, but both men and women alike also have been diagnosed, according to the National Institute of Allergy and Infectious Diseases.
There is no known cause of the disease.
Now, two and a half years after the diagnosis, Parkison, 34, of Charleston said she’s still adapting to her new “normal.” She has not been able to return to her position as a mortgage lender.
Her husband, Jeff Parkison, is the store manager for Jackson Chevrolet in Sullivan. She has two children, a daughter, Alex, and a son, Colton.
“It makes me very tired. It makes me hurt. It makes me — at times — sad,” she said.
Treatment of Wegener’s includes chemotherapy in pill form, Prednisone and steroids. Reducing stress helps the condition, and having a good support system is vital.
She’s been able to celebrate remission of the disease that came exactly two years to the date of diagnosis, on March 12.
Parkison said some patients require medicine for many years. About 80 percent of the cases do go into remission. But of that 80 percent, about 50 percent could suffer a “flare up” and must begin treatment again, she said.
Before the diagnosis, she attributed her weakened condition to normal stress of several of life’s factors: recent marriage, recent promotion at her job, and just buying a home.
Weeks went by and she recalls Christmas Day 2004, when she spent most of the day in bed, thinking she had the flu.
“When she first was sick I was thinking it might be pneumonia, because she said it felt like someone was sitting on her chest,” said her daughter, Alex, 14.
Her symptoms were mostly cold and flu-like, and she’d often lose her voice, which was believed to be related to strep throat or tonsillitis.
But, Wegener’s affects the ears, nose and throat, as well as kidneys, lungs, skin, eyes and joints.
She had a cough for a short time, and joints began to ache. One day she awoke to find one hand swollen to twice the normal size.
Her unexplained illness was becoming worse.
On March 12, 2005, her husband took her to the Sarah Bush Lincoln Health Center emergency room. A chest X-ray and routine blood tests were a part of the health evaluation. Tumors the size of a softball and a tennis ball, plus many small tumors, were detected in the lungs.
“I thought she had a really bad cold. When we were told it was Wegener’s, I didn’t really know what that meant,” said her son, Colton, 11.
Initial review caused doctors to consider that Parkison possibly had lung cancer, though until a needle biopsy could be done, it wasn’t conclusive.
After a needle biopsy the results showed a 60 percent chance of being lung cancer, a tissue biopsy of the lungs was ordered. The tissue biopsy showed it was Wegener’s.
“(Initially,) I was told there was a 98 percent chance I had lung cancer. I thought, ‘This can’t be happening.’ My biggest concern was my kids,” she said.
And when the probability dropped dramatically to 60 percent, Parkison said she instinctively knew she didn’t have cancer.
“I wasn’t in denial, but I just didn’t feel it was cancer, but I knew something was terribly wrong,” she said. “I really listened to my inner part and I knew it was something else.”
Doctors at Sarah Bush quickly arranged for her to see a rheumatologist in St. Louis. Among many symptoms, the swollen hand and aching joints remained a mystery.
She met a team of doctors and specialists at Barnes Hospital. Dr. J. Chad Byrd, rheumatologist, was given Parkison’s case.
“I was told then that it was believed I had either an autoimmune disease or a virus,” she said.
She said the pain of having Wegener’s is more than anything she’s experienced.
Parkison sports a positive and witty attitude and credits her support system.
“My mom stayed with me for six weeks. She took care of my kids, my house, my laundry, while my husband worked.”
Following several weeks of treatment with powerful drugs she was told the tumors had shrunk by 80 percent.
“I’m much more aware of everything — even things like the way the leaves blow — everything. I’ve learned to let go of a lot of things. Life’s too short,” she said.
Parkison credits the “unconditional love” of her family and friends; and dedication of medical teams, as well as her faith in God, getting her through the 2 ½-year-long ordeal.
“I’m finally able to close one chapter and start another one by talking to others.”
Contact Dawn Schabbing at dschabbing@jg-tc.com or 238-6864.
Add your comments
Not already registered?
Then click Here.
Comment policy:
JG-TC.com encourages readers to engage in civil conversation with their neighbors. Comments that are submitted are not posted to the site immediately. They go into a queue to be moderated and may take several hours to be reviewed. Comments posted on Saturday may not be reviewed until Sunday afternoon.
In order to keep the page a set width, long lines (mostly long links) will be chopped. Try putting spaces in your links or consider using tinyurl.com to make a smaller link that you can include.
We will never edit or alter your comments, but we do reserve the right to remove comments that violate our code of conduct.
No comment may contain:
* Potentially libelous statements; such as accusing somebody of a crime, defamation of character, or statements that can harm somebody's reputation.
* Obscene, explicit, or racist language.
* Personal attacks, insults, threats, harassment or inciting violence.
* Commercial product promotions.
If you have any questions, please contact our moderator.
|
|
CLICK TO ENLARGE
|
