Stoneham woman wants everybody to know about Lupus Awareness
Published on August 8th, 2001
STONEHAM, MA - The grizzly car crash was over in seconds, the disease that followed has taken years of her life, but how she reacted will change the lives of others forever.
Lupus is an auto-immune disease affecting 1.5 million Americans, including 37-year-old Sue Coughlin of Mountain View Drive.
There is no cure, and no one knows the cause, but early diagnosis can save lives. Coughlin dreams of a cure, but she has dedicated her life to raising awareness. She is organizing the Sept. 23 Walk for Lupus fund raiser in her free time between finance classes at UMass Boston and visits to the hospital. She urges Stonehamites to join the cause.
“I don’t want to be known as that person with lupus — that person fighting for the cause, well, that’s different,” Coughlin says.
Her life experience has been frighteningly different. A car accident on her 21st birthday began years of pain and an adult life defined by overcoming suffering to help others.
“I was in the passenger seat with no seat belt, the suicide seat the paramedics call it,” Coughlin says sadly remembering the story as it was told to her years ago.
After the crash Coughlin needed facial plastic surgery and an operation to disconnect nerves in her feet. The sympathetic nerves in her feet (fight or flight messengers) would not stop sending the panic reflex to her brain after being crushed in the accident. Coughlin had to leave her job in the finance industry.
“I come from a family where we never just sat around and watched TV, so not working was hard,” Coughlin says.
Although the cause of lupus is unknown, doctors believe extreme trauma may be one of the triggers. Chemical and emotional stress are also listed by the Lupus Foundation of America as triggers for the enigmatic disease.
Lupus is a rough opposite of A.I.D.S. Whereas someone with A.I.D.S. has almost no immune system defense, a lupus sufferer has a hyperactive immune system that eventually attacks healthy tissue.
Coughlin was in and out of the hospital for years after the accident. She suffered mostly from pain, fevers and fatigue. The doctors didn’t diagnose Coughlin with lupus until 1990.
“I know this will be hard to believe, but I was happy,” Coughlin said. “Finally I had a name for what was wrong with me, and now we could do something about it.” Although she knew there was no cure.
Diagnosis and treatment
Diagnosing lupus is difficult because multiple diseases have the same vague symptoms. The Lupus Foundation of America identifies 11 “most common” symptoms: joint pain (95% of lupus patients display this symptom), fever more than 100 degrees F (90%), arthritis (90%), prolonged or extreme fatigue (81%), skin rashes (74%), anemia (71%), kidney involvement (50%), pain in the chest on deep breathing (45%), butterfly-shaped rash across the cheeks and nose (42%), photosensitivity (30%), hair loss (27%), abnormal blood clotting problems (20%), fingers turning white or blue in the cold (17%), seizures (15%) and mouth or nose ulcers (12%).
But joint pain can indicate Lyme disease. A fever could indicate a common cold. Kidney pain could be from a bladder infection. Hair loss could be simply genetic. And the butterfly rash is often mistaken for ruddy good health. As a rule doctors look for four regularly occurring symptoms before diagnosing lupus.
“I was amazed at first that some doctors really didn’t know about lupus,” Coughlin said. “It’s more common than Multiple Sclerosis.” M.S. is commonly known by its initials and has an annual, national telethon.
But, besides ambiguous symptoms, lupus often goes undiagnosed because it manifests slowly. Even in serious cases, close to 85 percent of those diagnosed with lupus live another 10 years, according to the Lupus Foundation numbers.
“They call it a silent disease, or invisible disease,” Coughlin says.
To further complicate matters for doctors and patients, there are three different types of lupus:
Discoid lupus affects the skin; this form of the disease is basically a bad rash. Drug-induced lupus is triggered by certain drugs used to treat high blood pressure and irregular heart rhythm, but the symptoms fade if the medications are discontinued. Coughlin has systemic lupus, the potentially fatal form affecting any or all organs. An immunofluorescent antinuclear antibody (ANA) test revealed the destructive lupus proteins, or antibodies, in her body. This test usually seals the diagnosis.
Coughlin’s kidneys took the brunt of lupus’ attack. She underwent seven years of chemotherapy beginning in 1993.
Coughlin still takes steroids like prednisone to reduce swelling in her joints. Like most steroids, this drug can cause mood swings, she says. Immunomodulating drugs like azathioprine are also on Coughlin’s regimen to keep her active immune system in check. But weakening the immune system increases the chance of infection and anemia.
“The side effects of these drugs can cause serious problems even after the lupus fades,” Coughlin says. “That’s why I’m a big proponent of clinical trials.”
Coughlin has taken part in trials. She believes they are safe and crucial to finding better treatments, if not a cure. The Lupus Foundation is lobbying Congress to fund more treatment and new research of lupus.
“Look what Bill Clinton did for breast cancer because of his mother,” Coughlin says. “We just need awareness.”
During her treatment Coughlin began her college education. In 2000 she finished chemotherapy; the lupus is in remission, to borrow a term from the cancer lexicon. And Coughlin plans to receive her bachelor’s degree in finance from UMass in 2002.
“And then I’m going back to work, Hallelujah!” Coughlin laughs. It seems that after life is threatened everything looks different.
Someone to lean on
During her chemo and college years Coughlin has leaned on family and friends.
“Members of my family have taken time off work to take me to the hospital,” Coughlin says. “I couldn’t have made it without their support.”
But sometimes the little things make the biggest difference.
Mountain View Drive neighbor Maggie Yetman jokes that she’s old enough to be Coughlin’s grandmother (she’s not), but the women seem more like sisters.
“I try to be independent, but Maggie knows when I’m tired,” Coughlin says. Yetman helps with a meal or a ride to the doctor’s office.
“But this is not a one way street,” Yetman says, her vibrant voice stiffening as she leans forward to talk of loss. Yetman faced a personal tragedy a year ago, and Coughlin has been there for her friend.
Then Yetman changes her tune and does sound just a little bit grandmotherly: “Tell him about the walk you’re doing... Tell him about the TV appearance...”
Yetman lost two cousins to lupus in the 1970s, and she understands the value of Coughlin’s mission.
The future
Coughlin knows she may not live as long as she would have expected as a bright-eyed 21-year-old kid cruising around town. She has a herniated disk in her back — possibly a side effect of medication — and her doctors are hesitant to operate because an infection could reignite the voracious lupus antibodies. Her doctors also monitor her kidneys closely.
But life goes on, and Coughlin is using every moment to make a difference. She has done several interviews with national magazines and will soon make national television appearances to promote lupus awareness and research. As a member of the UMass Boston Chapter of the Golden Key National Honor Society Coughlin raises funds for academic scholarships and organizes volunteer efforts to tutor students in need and counsel young people about drugs and alcohol.
“Being out of work with my disability, it has been great to be able to do this,” Coughlin says. She never wallows, and she says that’s part of the reason she’s still so busy.
“If you give in to the disease, you can die,” Coughlin says.
As menopause approaches lupus often subsides. (Women are 10-15 times more likely to get lupus, according to the Lupus Foundation, but men are by no means immune.)
“My biological clock is ticking as they say, and not to have kids is tough,” Coughlin says. But Coughlin is Godmother to her brother David’s daughter, Ivy. “I cherish my nieces and nephews,” she says.
With the continued support of family and friends Coughlin promises to continue her fight to promote lupus awareness and research for a cure. She hopes her life will return to “normal” as her hormone levels drop.
No one can predict the future, and defining normal isn’t much easier, but after hearing her story, a simple truth resonates:
With every year the disease seems to grow weaker as Sue Coughlin grows stronger.
How you can help
Coughlin wants the people of Stoneham to turn out on Sept. 23 at 9 a.m. at Artesani Park on Soldiers’ Field Road in Boston for the three mile walk and rally for lupus awareness. She is, not surprisingly, on the organization committee.
For more information call 1-877-NOLUPUS.
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