Friday, May 10th, 2013...11:43 am
With no obvious signs, disease makes victims feel alone
Since 2004, Cindy Turley hasn’t had many mornings when she could roll out of bed pain free and full of energy.
In fact, to varying degrees, Turley’s day is enveloped in a cloud of pain and fatigue that she fights off through shear determination.
“The fatigue is unexplainable,” she said. “It is not just being tired. You get to the point your body just collapses. Your mind can say you will keep going, but your body makes you stop.”
Turley, 50, was diagnosed with lupus erythematosus nine years ago after a bout with bronchitis. Since then, instead of living life to its fullest, she is resigned to doing what she can. She takes about 13 medications daily, in addition to chemotherapy.
Lupus is an autoimmune disease in which the body’s immune system malfunctions and creates antibodies that attack healthy tissues and organs. The result is swelling, damage to joints, skin, blood, kidneys, heart and lungs. It is not contagious or cancerous.
Some 24,000 people live with lupus in Kentucky, and about 1.5 million struggle with it nationwide. According to Lupus Alliance of America, more people have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia and cystic fibrosis combined.
Although anyone can get lupus, about 90 percent of lupus sufferers are women, with black women three times more likely to have the disease than white women. Hispanic and Asian women are two times more likely and Native Americans are close behind.
Lupus is also a disease of flare-ups and remissions, and either can last for months. No one really knows what causes lupus.
Turley wanted me to tell you all that because not many of us know anything about the disease or its effect on our neighbors or co-workers.
“People look at you from the outside and don’t see that anything is wrong with you,” she said. “But on the inside I feel like my core temperature is on fire.”
The one tell-tale sign for most people living with lupus is a facial rash resembling the unfolding wings of a butterfly that spreads across both cheeks.
Shannon Rodriguez learned she had lupus when she gave her medical records to an internal medicine physician she worked with. She never got over feeling tired after giving birth to her daughter in 1999, but she only half-heartedly followed up on it and didn’t really expect the doctor to come back with any startling news.
He did, however, ordering a kidney biopsy for her and later hospitalization when it was determined that more than 50 percent of her kidneys were dead or damaged. She said she was three months from kidney failure.
“I didn’t know if I was going to live or die,” she said.
After chemotherapy, steroids and other medications, Rodriguez is managing the disease.
“I expect to hurt when I wake up,” she said. “My hardest time is when the fatigue is extreme. It’s like you are in a fog. You can’t concentrate and it happens for a week or two at a time.”
During those flare-ups, Rodriguez, 41, is careful to make lists and then check off items throughout the day so she won’t miss doing anything at work. Outside of work, Rodriguez feels guilty about missing out on fun times with her daughter.
Most people with lupus are hypersensitive to sunlight. It can cause lesions or trigger flare-ups. The windows of Rodriguez’s car are tinted and she tries to make sure her arm is covered when she drives.
Both Turley and Rodriguez have also had the florescent lights changed in their offices because UV rays can burn them.
But Rodriguez so desperately wanted to be with her daughter on a beach and at a water park, she decided to chance it. She donned protective sleeves, a hat and a lot of sunscreen just to spend quality time with her daughter.
“It was the best day I ever had,” she said. “The next day I slept all day. The sun really drains you and there was a rash from the sun. I think when the sun hits your body, the immune system thinks something is attacking and it starts attacking you,” she said.
Still, neither Turley nor Rodriguez is looking for your sympathy. They are supported by their family, friends and faith. They just want you to know there are a lot of people near you who are suffering silently with a disease that grabs very few headlines.
Both women are members of The Lupus Foundation of America, Mid-South chapter, a nonprofit voluntary health organization dedicated to finding causes of and a cure for lupus. The group provides services including support groups, information, referrals, literature and educational seminars.
May is Lupus Awareness Month. Members of the local chapter will have an information table at the Legends game on May 10 and they want us all to wear purple on May 17 to show support.
Their annual fundraiser, Walk to End Lupus Now — Lexington, is scheduled for Aug. 17 at Keeneland Race Course.
But more importantly, if you have lupus or know of someone living with lupus, or if you just want to know more about the disease, attend a meeting of the Lexington support group.
“If you know of someone who has (lupus), even though you can’t see it, try to understand it is a disease that greatly impacts their daily lives,” Turley said. “Explore it, learn more about it and find out how you can support those who are close to you a little more by getting involved.”
To learn more
The Lupus Foundation of America, Mid-South chapter has a local support group for people with lupus and their friends, family and neighbors.
When: 7 p.m., May 7.
Where: Lexington Public Library, Eagle Creek Branch, 101 Eagle Creek Dr.
Information: Contact Nancy Bishop by email at firstname.lastname@example.org, or visit national website at Lupus.org.