COPING: Ingrid Arneaud at her home in San Juan.
Living with LUPUS
Kimoy Leon Sing
A report posted online by Medical News Today, dated June 22, 2012 indicated a rise in autoimmune diseases such as lupus and Type1 diabetes that has left researchers at the Centre for Disease Control and Prevention in the United States baffled.
It is estimated that 1.5 million Americans, and at least five million people worldwide, have a form of lupus according to The Lupus Foundation of America. Although lupus can strike men and women of all ages they state, 90 percent of individuals diagnosed with the disease are women.
Ingrid Arneaud represents one of the five million people currently living with this terrible disease. The disease causes her body’s own immune system to become hyperactive and attacks normal, healthy tissue. What causes it is unknown.
According to Medical News Today, under normal function, the immune system makes proteins called antibodies in order to protect and fight against antigens such as viruses and bacteria. Lupus makes the immune system unable to differentiate between antigens and healthy tissue. This leads the immune system to direct antibodies against the healthy tissue - not just antigens—causing swelling, pain, and tissue damage.
In a recent interview with the Express, Arneaud bravely shared her story. Diagnosed with lupus in 1995, Arneaud’s simple life was turned upside down, leaving the mother of two wondering what to do. She said, “I am quite certain this illness crept up two years before. In 1995 was the full blast - rash, joint-pains, falling hair and tiredness. Other symptoms like loss of appetite and lethargic feelings also presented themselves - all quite new to me.”
“I was a ‘busybody’ as a working woman with housework and two teenage daughters. I was too tired to function; the tiredness no words can explain,” she added.
Everyday a struggle; Arneaud says she tries to remain optimistic despite having limited mobility and having to depend on others to do tasks she never had to think twice to do.
She said, “People think (we) people with lupus look well. I sound very well but people can be insensitive to the challenges people with lupus must face on a daily basis.” Arneaud said her main concerns were her children. Diagnosed with systemic lupus erythematosus (SLE) where more than one of the body’s organs is usually affected she also found out that there was no cure.
After much prayers and following her doctor’s advice when it came to medication and treating her symptoms, she said, “It took a while for the medication to work but it did work. It saved my life. I thank God I have seen my children grown and even seen a grandchild.”
“I joined the Lupus Society for education and to enquire how patients cope. Their stories are similar. A positive attitude and patience see me through my days in addition to adequate rest, proper nutrition, right dosage of medication and no stress. I thank God for his guidance and support of my family and friends for seeing me through,” Arneaud said.
While she cannot go to beach as she used to since most people with lupus are sun-sensitive, Arneaud enjoys spending her time writing poems and creating bookmarks.
WHAT IS LUPUS?
Lupus erythematosus (pronounced loo-pus e-ree-the-ma-toe-sus) is an autoimmune disease. It is one of many conditions in which the body's immune system produces antibodies against its own tissues. Antibodies are chemicals which are produced within the body to fight infections and cancers and they keep the body healthy. In the case of lupus, they are produced in large amounts against any tissue including the joints, skin, kidneys, heart, lungs, blood and brain and cause the tissue to become inflamed and therefore damaged. We don't know exactly what causes the body to react this way but lupus is not infectious and is not caused by cancer. There are some drugs which may cause lupus but this type usually get better when the drug is stopped.
Lupus affects women more often than men, especially from age 15 to 44 years although children may get lupus. Genetics may be involved because sometimes more than one family member may have lupus or another autoimmune disease. In Trinidad and Tobago, persons of African and Indian descent are more likely to get lupus than other races.
Most persons with lupus have only skin involvement with the type we call chronic discoid lupus or DLE. This type tends to causes thick scaly patches that often leave scars as they heal; they may occur on the skin and scalp. These patients do not usually have so many antibodies and therefore they do not have involvement of any part of the body other than the skin. Another form called subacute cutaneous lupus causes a scaly red rash that is very sensitive to sunlight.
In systemic lupus erythematosus or SLE, more than one of the body's organs is usually affected. Some patients have sudden involvement of the skin especially on the face with what is called the "butterfly rash". The rash is so called because it is situated on the cheeks and across the nose. This rash is scaly and red or brown and does not scar when it heals.
In SLE the joints may be painful and swollen and this may be severe enough to prevent the person from moving around. Other symptoms include poor appetite, weight loss, fever, hair loss and mouth ulcers. If the kidneys are affected, patients may have swelling of the hands, feet and face because the body loses protein through the inflamed kidneys. Involvement of the lungs causes difficulty breathing, pain in the chest with breathing and collection of fluid in the lungs. Inflammation of the brain results in seizures, and sometimes abnormal behaviour. There may be anaemia (low blood count) or bleeding due to reduction in the number of platelets (a component of the blood necessary for clotting).
Most patents with lupus, whether it is just skin involvement or systemic, tend to experience worsening of their illness after sunlight exposure. For this reason, it is necessary to avoid exposure during hours when the sun is at its hottest (which, for us is much of the day) and to protect oneself as much as possible if outdoors. This can be achieved by the use of protective clothing- hats, umbrellas, long sleeves and pants, and the application of sunscreens - creams or lotions which absorb or deflect the sun's rays. It is recommended that the sunscreen should have a sun protection factor (SPF) of at least 30 and should be reapplied every 2 hours especially if sweating occurs or if it is washed off by bathing in the sea or swimming pool.
Lupus is one of the great imitators in medicine. There are many signs and symptoms in common with other diseases. Each patient is different and it may take some time for the diagnosis to be made. A person suspected to have lupus has to be properly examined and has to undergo tests of blood and urine among others, depending on the signs and symptoms. Early diagnosis helps to prevent persons from developing complications.
Lupus cannot be cured, but it can be treated and controlled by drugs which suppress the immune system. Steroids are the drugs most often used to reduce inflammation in the patient's tissues. Other drugs include hydroxychloroquine, azathioprine, methotrexate and mycophenolate mofetil. Uncomplicated cases of skin disease may be treated with creams and do not require tablets. It is important for patients to take their medication regularly to prevent flares. As they improve drugs are reduced to the minimum dosages needed to maintain good health. Sometimes these drugs can be stopped altogether if lupus is well controlled. Patients also need to get enough rest and try to avoid stress. For those who are not otherwise restricted, for example by joint pain, moderate exercise is a good practice.
A diagnosis of lupus is not a death sentence. Persons can lead a full life once the condition is treated early and well controlled.
For more information contact the Lupus Society of Trinidad and Tobago at 623 -1731.
Submitted by the Lupus Society of Trinidad and Tobago