Autoimmune diseases: Live well, despite illness

Denise and Barbara Johnson
Photo by Karl Rabe.

When Denise Johnson was 30, she received news that changed the path of her life forever.

She had multiple sclerosis.

Johnson, now 33, thinks back on that time and says even though the diagnosis was tough to accept, there was also comfort in it.

“It was such a long process that I was glad to finally know what it was,” said Johnson, of Poughkeepsie.

During the six months Johnson waited to find out why things slipped through her numb hands, why her limbs at times felt paralyzed and why her legs gave way on her, she did her own research.

Finally, Johnson came to know that what had invaded her immune system was a chronic degenerative disease of the central nervous system that affects the brain, optic nerves and spinal cord.

MS is one of the 85 known autoimmune diseases, which result when the body does not recognize its own cells and attacks its immune system. Such diseases have increased dramatically over the last two decades, especially among women, leaving people grappling with a range of symptoms -from pain and fatigue to paralysis.

The National Institutes of Health reports there are 23.5 million people with autoimmune diseases, including lupus, rheumatoid arthritis, type 1 diabetes, scleroderma, ulcerative colitis and Crohn’s disease.

According to the U.S. Centers for Disease Control and Prevention, autoimmune diseases make up the third-largest category of disease behind cancer and heart disease.

More awareness

Dr. Maryanne Wysell, with Orthopedic Associates of Dutchess County, specializes in the treatment of lupus and rheumatoid arthritis, a chronic disease in which the immune system attacks the joints and causes inflammation. She surmises awareness is likely a factor behind the surge in diagnoses.

“It seems there is an increase, and I think it’s because internists and other doctors are looking for these diseases and people are getting diagnosed earlier and getting treated earlier,” Wysell said.

The reason for the spike in autoimmune diseases is largely a mystery, but varied medical research efforts have pointed to environmental, genetics and dormant infections as factors.

According to a March 2005 report by the National Institutes of Health Autoimmune Diseases Coordinating Committee, about one-third of the risk of developing an autoimmune disease can be attributed to heritable factors while the rest is thought to be based on non-inherited factors.

Lupus, a chronic disease in which a person’s organs or tissues become inflamed, affects 500,000 to 1.5 million Americans, according to the the Lupus Foundation of America – making it one of the most common autoimmune illnesses.

Patty Guidice, president of Hudson Valley Lupus Foundation, agrees awareness is a factor in the increase of lupus cases.

“More doctors are now aware, are looking for symptoms, testing and are able to diagnose it,” Guidice said.

Early diagnosis and treatment are crucial factors in slowing the development of diseases, Wysell said.

“The earlier, the better for rheumatoid arthritis and especially for lupus because if we catch it early and start aggressive treatment, it can prevent damage to organs,” Wysell said.

Though an early diagnosis can greatly facilitate a patient’s treatment from a physical standpoint, aggressive intervention may not prepare an individual for the emotional strain a diagnosis can levy on a person’s life.

Don Plunkett’s early diagnosis surely did not brace him for the chain of events that ensued. When he retired in 1984, there were no balloons, sheet cake, good luck speeches or gold watch to celebrate his 19 years as a New York state trooper.

Retirement was unwanted and much earlier than he had anticipated. It came during a trying time – right after his 19-year marriage broke up and shortly after he found out the cause of his double vision and staggered walk was multiple sclerosis.

“It’s certainly not the way I envisioned my life,” the New Windsor resident said.

The MS diagnosis created a sense of disquiet and fear in Plunkett’s life, but he says he turned the tables on the disease and changed his life – for the better.

“I went back to school and got my master’s degree and I started lobbying in Albany and D.C., for MS research funding. I turned everything to positive,” Plunkett said.

Plunkett, 65, is still living by that credo today. He competes annually in the National Veterans Wheelchair Games, winning several gold medals. He also runs an MS support group.

“I know that a lot of people have MS in this area, but they choose not to go to support groups,” Plunkett said. “I recommend the groups because you find out that you are not alone, and it’s an opportunity to share.”

As Barbara Johnson watched the health of her daughter, Denise, weaken and waited for answers, she thought of how her body had waged a war against itself three decades ago.

Bound by pain and love

It took months to find out why the skin on her hands became blackened and seemed as hard as a brick. Then a biopsy gave a name to the enemy – scleroderma.

It’s a chronic connective tissue and autoimmune disease that affects an estimated 300,000 people nationwide. Hardening of the skin is one of the most recognizable features.

“I was diagnosed with scleroderma 31 years ago. It took a very long time to find out what was going on. Denise was about 2 years old then,” Barbara Johnson said.

Though there were not a plethora of options for treatment, Johnson, now 64, was determined to survive. The City of Poughkeepsie resident endured the nosebleeds, fatigue and for a while, took high doses of prednisone, a corticosteroid that reduces inflammation but can cause side effects such as weight gain, mood swings, weak muscles and increased hair growth.

“When I found out about the harmful effects of prednisone, I got off of it because I knew I had to be around for Denise,” Barbara Johnson said.

As determined as she was, the scleroderma was equally as relentless. Johnson’s kidneys failed and she withstood dialysis exchange, a grueling process in which the abdominal cavity is drained several times per day. Despite those daunting circumstances, Johnson remained strong.

“Sure I was depressed, but I eventually found a peace. I never felt that I was going to die. Because Denise was my youngest, I knew I had to live – I lived for Denise,” she said.

Though concrete causes for autoimmune diseases continue to confound researchers, there have been significant advances in the treatment of some of the illnesses, such as lupus and arthritis.

Wysell said new medications have improved the quality of life for some patients.

“In the last 10 years, we’ve seen great progress in treatment with new biological agents and injectable medications,” she said.

Those advances have enabled Denise Johnson, who was once wheelchair-bound from MS, to walk on her own again.

Since starting a new medication, thought to be one of the most effective drugs available for MS patients, she has regained 80 percent of her mobility.

Also, watching her mother live with a chronic illness has been a source of encouragement and strength.

Barbara Johnson manages the scleroderma with medication, rest and avoiding stressful situations. The disease is believed to be the cause of the other ailments she has developed – diabetes, gout, high blood pressure and a weakened heart. Still, she is grateful.

“Last year, I was hospitalized three times for severe joint pain and once for congestive heart failure, but this year has been a good year,” Barbara Johnson said.

Denise Johnson is equally optimistic.

“For a while, I was angry and depressed and I wanted to be left alone, but fortunately I had so much support from my family and friends, that it helped me. You can live again. You don’t have to let the disease kill you,” she said.


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