Learning to live with a life-changing illness
Seven years ago Devene Smith got some unexpected news.After a long journey trying to discover the cause of her symptoms, it was discovered that she had systemic lupus.Mrs Smith was 38 years old.Today is World Lupus Day and The Royal Gazette is highlighting one of the Island's lupus sufferers.Lupus is often mis-diagnosed as the symptoms mimic so many other diseases. There are four different forms of the disease: systemic lupus erythematosus, cutaneous lupus erythematosus, drug-induced lupus erythematosus and neonatal lupus.The symptoms range according to the type of disease. The most common include fatigue, joint and muscle pain, skin problems, sensitivity to light, headaches, depression, anxiety, memory loss, heart problems, mental health issues, hair loss, fever and swollen glands.Mrs Smith was diagnosed as having systemic lupus erythematosus shortly after suffering a stroke.Her diagnosis came from two unexpected sources a childhood friend, who noticed her complexion had darkened, and a cardiologist aunt who was also a lupus sufferer.“I woke up one morning and I had a dark patch going across my face, I blew up, my hair fell out, I couldn't breathe properly and I couldn't think straight and [my friend] said, ‘you know, I think you have lupus'.”Mrs Smith then faxed her aunt her symptoms and she came back with the same diagnosis.“I finally knew what was going on,” she said.“[Systemic lupus erythematosus] is the worst [type of lupus] because it affects your internal organs. I just knew that I had to accept it, because there was nothing I could do about fighting it and once I did that it was fine.”Her daughters were happy too, as they were growing weary of her mood swings.“I wanted to know why I was having anger bouts. The medications that they had me on make you agitated, paranoid; I was on 13 different pills, so I never knew whether I was coming or going.”She is currently on steroids and other drugs to protect her against seizures and she has found that a positive attitude helps.“I try not to be a whiner,” she said.Before becoming ill, Mrs Smith worked as both a paraeducator and a home care aide. At the moment she is unable to work as she never knows what symptom of lupus will show up on any given day.“I found that everything that came at me made me confused,” she said.“I can work under stress, but it seemed that everything was coming to me in a rush. I have some days when I can't function or move and I just want to be alone.”Hair loss has been a problem, along with short-term memory loss.“I used to have a weave, but now I wear a wig, because my hair fell out after I was on MetaTrace.“And I could be in the middle of a conversation with someone and then be like, ‘what did I just say?' But now that they have taken me off a lot of the medication it has improved.”A change of doctors led to a reduction in medications.“That was the best thing they did, because they wanted to know how I was feeling and they conferred with my family.”As her lungs harden and breathing becomes more difficult, she is acutely aware that her time with her family and four grandchildren will be cut short, but she takes it with a light heart.“I know that I am going to leave this Earth and I tell my eldest daughter, and she gets upset, that if she doesn't want me to come back and haunt her, make sure that I have on my Tyra Banks wig and my Mac makeup I already have it put aside.”Her family's unwavering support has kept her going.“I have a loving husband [Kevin Smith] who makes sure I've eaten, that I am bathed, who doesn't get on me because I can't do my wifely duties, he works right along with everything I am.“He remembers how he met me and we've been together for 27 years. This man works every day and he hands me his whole paycheque.“He [does] extra work so that I can have everything that I need, I couldn't ask for a better man.”For more information on the Lupus Association of Bermuda telephone 799-1081.
Systemic Lupus
Erythematosus
Systemic lupus is the most common form of lupus, and is what most people mean when they refer to “lupus”. Systemic lupus can be mild or severe. Some of the more serious complications involving major organ systems are:
n inflammation of the kidneys (lupus nephritis), which can affect the body's ability to filter waste from the blood and can be so damaging that dialysis or kidney transplant may be needed
n an increase in blood pressure in the lungs (pulmonary hypertension)
n inflammation of the nervous system and brain, which can cause memory problems, confusion, headaches, and strokes
n inflammation in the brain's blood vessels, which can cause high fevers, seizures, behavioural changes,
n hardening of the arteries (coronary artery disease), which is a build up of deposits on coronary artery walls that can lead to a heart attack
Cutaneous Lupus Erythematosus
This form of lupus is limited to the skin. Although there are many types of rashes and lesions (sores) caused by cutaneous lupus, the most common is raised, scaly and red, but not itchy. It is commonly known as a discoid rash, because the areas of rash are shaped like disks, or circles. Another common example of cutaneous lupus is a rash over the cheeks and across the bridge of the nose, known as the butterfly rash. Other rashes or sores may appear on the face, neck, or scalp (areas of the skin that are exposed to sunlight or fluorescent light), or in the mouth, nose, or vagina. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.
Approximately ten percent of people who have cutaneous lupus will develop systemic lupus. However, it is likely that these people already had systemic lupus, with the skin rash as their main symptom.
Drug-induced Lupus Erythematosus
Drug-induced lupus is a lupus-like disease caused by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but only rarely will any major organs be affected.
The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension), procainamide (used to treat irregular heart rhythms), and isoniazid (used to treat tuberculosis). Drug-induced lupus is more common in men because they are given these drugs more often; however, not everyone who takes these drugs will develop drug-induced lupus. The lupus-like symptoms usually disappear within six months after these medications are stopped.
Neonatal Lupus
Neonatal lupus is a rare condition that affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb. At birth, the infant may have a skin rash, liver problems, or low blood cell counts, but these symptoms disappear completely after several months with no lasting effects. Some infants with neonatal lupus can also have a serious heart defect. With proper testing, physicians can now identify most at-risk mothers, and the infant can be treated at or before birth. Most infants of mothers with lupus are entirely healthy.
