Lupus1

Pittsgrove Township resident Tiffany Hoffman lives with Lupus - an autoimmune disease.

(Photo provided)

The word Lupus comes from the Latin word for wolf.

"A violent, unpredictable animal," said Dr. Stephen Soloway, M.D., of Arthritis and Rheumatology Associates of South Jersey in Vineland.

And that's just what the autoimmune disease can be for those diagnosed with Lupus.

Soloway, who sees approximately 500 Lupus patients throughout the world, said Lupus is triggered by a malfunction of the B-Lymphocytes - a type of white blood cell.

This malfunction causes countless complications including skin rash, swelling of vital organs, joint pain, and even death.

"We know Lupus occurs when there is B-Cell dysfunction, but we don't know the cause, and not all patients fit all (symptoms) all the time," Soloway said.

Patients are tested for Lupus in many ways, but if a patient tests positive in both the antinuclear antibody (A and A blood test) and DNA test, the result is positive for Lupus.

Pittsgrove resident Tiffany Hoffman, now 31, was diagnosed with Lupus in September 2011, however she had been symptomatic for seven years prior.

Her symptoms began in 2005 when she was pregnant with her daughter.

"I had swelling in my joints and my eyes swelled shut," she said. "After she was born, my organs started to swell. First my liver, then my heart, then my kidneys."

However, because her blood tests didn't show the signs of Lupus, doctors refused to diagnose her with the autoimmune disease.

"The bloodwork was inconclusive, and when they did an MRI of my organs, nothing was showing that would cause the swelling," Hoffman said.

And so, the 21-year-old was put on steroids for the inflammation.

Finally, seven years later, after being bound to a wheelchair for several months, Hoffman was diagnosed and began treatment for Lupus.

Theresa LaMonaca, Washington Township resident and owner of Treasures on Broadway in Glassboro, first experienced symptoms of Lupus in 2002,

Washington Township resident Theresa LaMonaca lives with Lupus - an autoimmune disease.

"I had terrible joint pain, shortness of breath, was very swollen, and then one day I literally could not walk," LaMonaca said. "Soon after that, the headaches started. That's when they put me in the hospital."

It didn't take doctors as long to figure out that LaMonaca had Lupus. She was officially diagnosed in 2003.

While they began to treat her for Lupus, she said the doctors had to also treat her for the immediate issues caused by the disease.

"I had a thrombus (blood clot) in my brain so they were focusing on the neurological with me," she said. "It was scary."

LaMonaca went in for an MRI every three months until doctors finally got her headaches under control.

But even after diagnosis and start of treatment, Lupus - that violent, unpredictable animal - can rear its ugly head at any time.

"They call Lupus 'The Great Imitator' because it can show up in many different ways," Hoffman said. "That's the scariest part. You can't prepare for it because you don't know what's coming."

Earlier this year, Hoffman suffered an unexpected stroke which doctors believe was caused by vasculitis in her aorta and its branches - a condition brought on by the Lupus.

Soloway said one common symptom of Lupus is a rash called Lupus Vulgaris - a "horrible" facial rash that is diagnostic of the disease.

"When common Lupus presents, the patient gets a red rash across the nose and cheeks," Soloway said.

However, Lupus Vulgaris is blistering and painful.

"When I go into the sun, I get a butterfly rash across my face," Hoffman said. The sun also causes her Lupus to "flare."

Hoffman, LaMonaca, and all Lupus patients are highly sensitive to the sun.

"If I'm in the sun, it causes a (Lupus) flare," Hoffman said. "One of my biggest issues is, when I get a flare, I can't breathe."

Hoffman has developed COPD (Chronic Obstructive Pulmonary Disease) as a result of Lupus.

She said she takes more steroids and uses an inhaler when the COPD kicks in, but those treatments don't remedy the situation.

"I usually end up in the ER for breathing treatments," she said.

Dr. Stephen Soloway, M.D.

Soloway said, for Lupus patients, the sun is simply "bad."

"We don't know why the sun causes flares," he said, noting doctors aren't sure if the sun's rays or the heat cause the reaction. "We just know that the sun causes flares."

Neither Hoffman nor LaMonaca have let Lupus hold them back, and both spend much of their time raising awareness and funding for Lupus.

On May 17, Hoffman and her team will participate in the Lupus Foundation of America's Walk to End Lupus Now South Jersey in Ocean City for the second consecutive year.

"This year we doubled our amount of walkers," she said.

Hoffman said she also considers sharing her story a way of helping raise awareness.

"One of the biggest things, for me, is to be very open and talk about it," she said. "A lot of people come to me and ask for advice and support. I've accepted where I am in my life and have educated myself about the disease, so I can share that knowledge."

LaMonaca also shares her experiences, participates in the Lupus Loop in Philadelphia during the fall, and hosts a Lupus fundraiser every spring called the Spring Butterfly - a fashion show and luncheon that benefits the Lupus Foundation of America's Greater Philadelphia Tri-state Chapter.

One thing both women said is that Lupus is an "invisible disease."

"On the outside we look great," LaMonaca said. "But on the inside, we're a hot mess."

Hoffman said she has seen Lupus patients ridiculed for parking in handicapped parking spots and during other situations where those who are unaware don't understand.

"I've heard so many people say they are having a flare and park in the handicapped spot with a handicap sticker, and people leave nasty notes on their cars because they don't 'look' sick," she said. "But the symptoms come and go. One day you may feel good enough to go shopping, but that will exhaust you for the next few days. It sucks that people can't educate themselves."

Soloway said there are many symptoms that can be overlooked, but that could lead to a Lupus diagnosis.

"One thing is that if you get sick when you go in the sun, get checked for Lupus," he said. "If you're told you have Pleurisy, get screened. If your fingers turn white, blue and red; if you have an unexplained blood clot; if you have recurrent pneumonia for no reason."

Arthritis is one of the most common symptoms of Lupus.

"It's so different for every body," Hoffman said. "I have met so many people now who have it. At first, it was pretty rare, but now there are so many people being diagnosed."

Soloway is recognized as one of the top physicians in his field, earning him Top Doctor Awards every year since 2003.