Spend time with any lupus sufferer and you will notice one thing they all have in common – resolve.
Take 39-year-old Patrick Cowherd for example.
As a longtime cheerleading coach Cowherd lives a very active life that includes regular exercise, coaching, and working long hours at The Cheerleading Agency LLC, a non-profit he founded last year. However, what separates Cowherd from others who maintain busy schedules is that he suffers from an autoimmune disease that causes extreme fatigue, achy joints and unexplained fevers – oftentimes simultaneously.
“I’m very active, but I’m also hard-headed. When my body says stop, it’s hard for me to stop,” explained Cowherd. “If I overdue it, it puts me into the relapse thing where I’m too weak to do anything else the next day or two.”
Cowherd is one of 1.5 million people in the United States who have lupus. While individuals of all ethnicities can suffer from lupus, the disease disproportionately affects women ages 15-44 of African, Hispanic, American Indian or Asian decent.
Symptoms of lupus include, but aren’t limited to hair loss; swelling in the feet, legs, or around the eyes; a butterfly-shaped rash; and pain in the chest or deep breathing. It’s these general symptoms that not only make the disease hard to diagnose, but also difficult to treat. As a matter of fact, it’s been 50 years since any new drugs have been developed to specifically treat the chronic disease.
Phyllis Simko, president and CEO of the Indiana Chapter of the Lupus Foundation of America says she’s frustrated at the lack of drugs available for lupus suffers.
“I’m frustrated because as much as we try to educate the public, we’re constantly faced with barriers. It’s hard to diagnose because it’s a genetic thing,” said Simko. “We’ve heard recently several drug companies have dropped out – they’re just not being able to find medications that will help people with lupus.”
Simko’s husband Richard died of complications from lupus on February 19. He was 75.
Lupus is a disease that causes the immune system to attack healthy tissues in multiple organ systems. Throughout Richard’s 25-year bout with lupus he had two total hip replacements, prostate cancer, a quadruple bypass, cataract surgery, was diagnosed with diabetes, and endured cardiac and kidney problems – all caused by lupus.
Experts say that development of a new lupus drug will enhance the quality of life for sufferers.
“We mostly treat lupus with very strong drugs that suppress the entire immune system, said Duane Peters, advocacy and communications, Lupus Foundation of America. “For example, prednisone is a steroid and a great anti-inflammatory (that) is very effective in stamping down the disease – but it brings a whole host of side effects such as osteoporosis, weight gain and increases the risk for diabetes.
“Certainly having drugs that are equal to the drugs we have now but have much better safety is a dramatic step forward. (New drugs) would not only help people dealing with the lupus, but also in not having to deal with the side effects of the treatment. That would be a significant improvement.”
As challenging as it is to live with lupus, doctors are confident that sufferers can lead relatively healthy lives by effectively managing the disease and its side effects, taking medications and by maintaining a positive state of mind. Lorri Tally, a 10-year lupus sufferer agrees.
“When we’re in denial, that’s when it becomes a problem. Even though it’s a very serious illness, people need to understand that there is hope. There is hope if you take action.”
To volunteer, attend a lupus support group, or make a donation call the Lupus Foundation of America, Indiana Chapter, Central Indiana office at (317) 506-5786. You may also contact Leigh Hinkle, director of development at leigh@lupusindiana.org.
COULD I HAVE LUPUS?The Ad Council in conjunction with the Lupus Foundation of America and the U.S. Department of Health and Human Services’ Office on Women’s Health recently launched the “Could I have lupus?” campaign.
The multi-year campaign is designed to raise awareness of lupus, increase recognition of symptoms and to encourage those experiencing symptoms to talk to their doctor.
For more information visit www.couldihavelupus.gov.
LUPUS SYMPTOMS
* Extreme fatigue
* Painful or swollen joints
* Headaches
* Fever
* Anemia
* Swelling of the feet, legs or around the eyes
* Chest pain
* Hair loss
* Sun or light sensitivity
* Butterfly-shaped rash
* Fingers turning white and/or blue in the cold
* Ulcers in the mouth or nose
Information courtesy of www.lupus.org.
