Lupus Stories Around the World

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Learning about Lupus

IT’S a disease that affects at least 50,000 people in the UK, but lupus is one of those things that many of us know nothing about.
The effects can be crippling and even life threatening, but to most people - including many doctors - the condition remains a mystery.

"It's most important that lupus is recognised through early diagnosis so that it can be controlled," says Chris Maker, director of Lupus UK. "Doctors and patients need to be aware of it so they can take appropriate medication and action, with lifestyle changes to accommodate it."

This week Lupus UK set out to widen understanding of this damaging disease with the launch of its Lupus Awareness Month.

Definition

In its simplest terms, the immune system goes into overdrive and produces too many antibodies. Instead of these doing what they should do - fight disease and foreign bodies - they turn on a person's own system and target the body itself.

"There is a wide spectrum of illness," Maker says.

"Some people who have got lupus more 'lightly' can run marathons, but I've known others who have had to use wheelchairs because of their condition.

"It can be a terrible disease and, at its worst, people can die from lupus."

Common symptoms are joint pains, skin rashes, tiredness and exhaustion. Other sufferers might have swollen lymph glands, fever and hair loss. In extreme forms, the condition can damage the kidneys, heart, lungs, skin and brain.

Lupus mainly affects women - only one in 10 sufferers are men - and is most common in those of childbearing age. But even teenagers and children can get it. It's thought there could be a genetic or hormonal link, and various things are believed to trigger it - sunlight, viral infection, puberty, stress and trauma.

But no one is completely sure what causes lupus.

However, one thing is certain. The earlier it is diagnosed, the quicker it can be controlled - and that is crucial to the patient's long-term health and wellbeing.

"Lupus cannot be cured. Once it's there you've got it for life, but that doesn't mean it's always active," Maker explains. "Sometimes people go for a long time without a lupus flare, but they always have to be aware that they have got it and manage their life accordingly."

In fact, diagnosing lupus is one of the most difficult things about it. Symptoms can be displayed in many different ways and often mimic other conditions.

"Sometimes people can go for years without a diagnosis and it can have a real impact on their quality of life," Maker says. "But once people have a diagnosis, they can alter their lifestyle to avoid aggravating the condition."

Many avoid strong sunlight, as sensitivity to the sun's UV rays is quite common in lupus suffers.

Others learn to pace themselves, knowing that if they overdo it, they'll get a flare-up. Still more might find that particular foods can trigger a reaction, and learn to avoid them.

"Everybody is different. It's a case of finding ways to manage your life that avoid triggering a flare-up," Maker says.

Drugs are also important in controlling the illness. A broad range of medications are used to help treat symptoms, including anti-inflammatories, steroids and immunosuppressive drugs.

"These suppress the immune system, but of course the drugs themselves often have side effects and that usually means more drugs. I know of one woman who took 200 a week just so her condition could be kept under control," Maker says.

Developments

Current medical developments are looking into more specific biological therapies which will have fewer side effects.

Lupus UK helps fund research into drug treatment, and also supports lupus nurses throughout the UK. "This is most important because they generally have more time than busy consultants to spend with patients and talk things through with them," Maker says.

But one of the big target areas for Lupus UK is general practitioners. "We want to alert doctors to the symptoms so they can be recognised immediately. Then patients can be sent for tests and a consultation with a rheumatologist who specialises in the disease," Maker says.

"It is often hard to recognise, but it's crucial that people know they have lupus. An early diagnosis can make a massive difference to their lives."

 

www.LupusMCTD.com

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Oberlin woman and her daughter diagnosed with disease


Active, full of energy and vibrant. That’s how Felicia Randleman of Oberlin describes how her life was before 1993. But just as Randleman was embracing the newfound independence of her 20s, a disease she and her family knew nothing about changed everything.
What they thought was arthritis turned out to be a chronic inflammatory autoimmune disease called lupus, which more than 16,000 Americans are diagnosed with each year, often months after doctors begin poking and prodding them looking for answers.

“It was kind of shocking when I finally found out,” Randleman said in a quiet voice, clearly fatigued from the effects of the disease. “I didn’t know you could die from it.”
Lupus is a life-threatening disease that causes the body’s own immune system to turn against organs and body systems, believing they are foreign substances. Doctors often take months to diagnose the disease after trying to fight the secondary problems.
Randleman remembers that during the time between her first doctor visit at Allen Memorial Hospital and her diagnosis at the Cleveland Clinic, she didn’t think her condition was very severe. When she woke up one morning and couldn’t get out of bed, however, she knew a Tylenol wasn’t going to fix her.

“I’ve learned that it is a very nasty disease to have,” she said.
And, unlike lightning, lupus doesn’t mind striking twice in one place. Lupus is known to run in families, which Randleman learned the hard way. Six years after her diagnosis, her mother, Joyce Randleman, also was told she had the disease.
“Doctors told me I carried the gene for the disease, but I don’t believe them,” Joyce Randleman said. “I don’t want to believe I somehow caused this for my daughter.”
According to the Lupus Foundation of American, the cause of lupus is unknown, but there are environmental and genetic factors involved. In addition, there are three types of lupus that vary in severity from discoid, which only affects the skin, to systemic, which is the most severe form of lupus.

Both women have systemic lupus, although the disease is taking very different paths in each.
Joyce is in remission. She is doing well, eating a balanced diet and exercising.
Felicia, however, has had numerous surgeries, spent countless days in the hospital, has difficulty hearing, gets around in wheelchair, goes to dialysis three times a week while waiting for a new kidney and is very easily tired.
She is not the woman she used to be, said her father, Douglas Randleman. Yet, he knows her life still has purpose.
“If she wasn’t supposed to be, we wouldn’t be sitting here,” he said.
The family plans to turn this month — which is Lupus Awareness Month — into a time of celebration and education.
“You never read about it, but people do have lupus,” Douglas Randleman said. “It’s time people read about it.”

www.LupusMCTD.com

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Living with lupus
The disease affects an estimated 7,000 to 10,000 in Hawaii

CHERYL ANN JONG, Tracy H. Okubo and Rep. Mark Moses are among islanders who struggle with lupus, one of the most perplexing, severe and sometimes life-threatening diseases.


The little-known chronic autoimmune disease causes the immune system to attack the body's own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood or skin.

 
It usually occurs between ages 15 and 44. Causes are unknown and there is no cure, says Jong, president of the Lupus Foundation of America Hawaii chapter.

It is called a "woman's disease" because it is more frequent among women, but many men also are affected.

Based on national statistics, Jong said an estimated 7,000 to 10,000 Hawaii residents have lupus.

"Realistically, it is probably a lot more because of our ethnic diversity," she said, explaining the disease is two to three times more common among native Hawaiians, Polynesians, Asians, African Americans, Hispanics and American Indians.

With early detection and treatment, most patients can have a "somewhat normal" lifestyle, she said.

Jong, 39, said she had three ministrokes, asthma, an irregular heartbeat and arthritis, and had lost part of her lung capacity by the age of 15. Yet she was not diagnosed with lupus until age 20.

Okubo, administrative assistant to state Human Services Director Lillian Koller, said she was diagnosed with lupus at age 15.

She had red splotches on her legs, and they were always sore and painful, which she attributed to cheerleading, water polo and playing in the marching band, she said.

She was lucky, she said, because a blood test technician who had a sister with lupus noticed she had the same butterfly-shaped rash across her cheeks and nose.

Because lupus patients are sensitive to sun and light, she had to give up her outdoor activities.

Okubo, who was 27 last Friday, said she also has fibromyalgia and rheumatoid arthritis. She was on medications initially but has been in remission for 10 years, she said.

She has vision and kidney problems and other long-term effects from the medication but takes no medicine now.

She works out at the gym three times a week, does light weight exercises and tries to eat healthy. Her running these days is tied to her bid for the 25th District (Tantalus-Makiki) House seat on the Republican ticket.

Jong is trying to make people more aware of lupus, operating from her Alewa Place home and a Lupus Foundation office.

Unlike Okubo, Jong takes a lot of medicine and has days when she "crashes." She was on intravenous chemotherapy, which she said damages the liver. Her prescriptions can run up to $300 to $400 a month.

Jong did not know for 12 years that her pain could be controlled, but it has been reduced 50 percent with medicine, she said. "Other people are way worse than I am. Some can't get out of bed in the morning."

There is no new specific drug for lupus, Jong said. "For the first time in 40 years, they're exploring new opportunities for drug treatments."

Moses (R, Makakilo-Kapolei) said his earliest symptoms might have appeared in 1983, when he was a naval flight officer with the Marine Corps, stationed at Camp Smith.

He broke out with what doctors said was a severe case of poison oak. "But there is no poison oak in Hawaii. ... It lasted a few weeks," he said. "I might have had other symptoms, but I'm a big, tough Marine," so he did not pay any attention when he had fatigue, pain and some jaw problems.

About 1988, "it got real bad," he said. "I had all kinds of symptoms."

Back then, 14 criteria were used to diagnose lupus, and he had 12 of them, Moses said. Now there are 11.

He said a doctor at the Naval Medical Center in Bethesda, Md., suggested he take medical leave and enjoy life. When Moses asked what he was trying to say, he said the doctor told him he had a maximum of five years to live.

Moses, 58, said he retired from the military but his service was extended, without flying duties, to 1991 because of the Gulf War. Returning home, he worked as a civilian at the Pacific Missile Range, then got involved in community affairs.

He said he "wanted to retire and go fishing" but decided to run for the House in 1996.

He broke his hip several years ago, and it had to be screwed together, forcing him to work and campaign in a wheelchair, on crutches and with a cane. He had hip replacement surgery in 2003.

Moses continues to speak about lupus at events and on the House floor.

"Whenever I have aches and pain, I think maybe it's age," he said. "Pain never bothers me much ... maybe it's Marine Corps training. I have very, very high tolerance for pain."

www.LupusMCTD.com

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Help for the lupus cause

AS PART of the 20th anniversary celebrations at INTI College Subang Jaya (ICSJ), a charity carnival, with the theme INTI with the Community was held recently to raise funds for the Persatuan Systemic Lupus Erythematosus Malaysia (PSLEM) Association. 

Organising chairperson Jasween Kaur, an American Degree Programme student, said PSLEM was chosen because she felt that unlike other critical illnesses such as cancer and AIDS, lupus was not widely known.

The event had many performances, competitions, stalls and lucky draws. All the activities saw both the students and staff taking part. 

ICSJ principal Margaret Ong presented a cheque for RM5,000 to PSLEM honorary secretary Chee Siew Lian. 


 
Chee (left), receiving the cheque from Ong (third from left). Looking on are members of the organising committee of the fund-raising carnival.
Chee said: “I am touched by the effort of INTI students and staff in creating awareness of SLE and working hard to raise funds to support the association.” 

ICSJ and PSLEM believe that the money donated will prove to be of great use to educate the public further on lupus which is a chronic, auto-immune disease. 

Lupus causes the patient’s body to make large quantities of blood proteins or antibodies that react against the person’s own tissues. 

There are two types of lupus – Discoid Lupus Erythematosus (DLE) and Systematic Lupus Erythematosus (SLE). DLE only involves the skin area and rarely spreads to other organs. However, SLE can spread to other organs and can be fatal. 

The sufferers are mainly women in their childbearing years but it affects about 10% of men and children. 

In Malaysia, there are 10,000 sufferers who have been diagnosed. The figure may be more as awareness about the disease is still relatively low.

PSLEM was formed in 1994 and has about 1,200 members. 

www.LupusMCTD.com

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Lupus: the painful predator

 Saturday, October 28, 2006


The scars on the hand of a lupus sufferer

Two years ago Shaniquiwa Williams found out she had lupus and it forced her to quit her job. Now the pain is so severe on some days that it's a struggle just to take care of her three-year-old boy.

"It makes my joints ache real bad to where it's like my body will lock up on me. It's hard for me to move or anything," Williams explained.

Lupus is a chronic autoimmune disease that turns the immune system against the body, harming healthy cells and tissues. It can affect many parts of the body including the joints, skin, kidneys, lungs, heart or brain.

Experts don't know the exact cause of lupus, but they've said it can be a combination of genetic, environmental and hormonal factors. They do know, however, that it's not contagious and it does run in families. Also, it is three times more common in black women than in white women.

According to Dr. David Karp, lupus is a mild disease for most people. For some, however, it can cause serious even life-threatening problems.

"Sometimes lupus can be fatal, particularly if patients have heart or lung involvement. Don't ignore early signs and seek treatment," Karp warned.

But there's help on the horizon for people like Williams. Dr. Karp is working on a cure.

1.4 million people in the United States currently have lupus and nine out of ten of them are women.