Lupus is the name given to a group of chronic immune diseases. It affects about 15,000 Canadians-approximately one in 2000.
Systemic lupus erythematosus (SLE) occurs when the body’s immune system begins to malfunction and attack healthy tissue in various parts of the body, causing inflammation and damage. Tissues affected can include the skin, joints, muscles, kidneys, lungs, heart, blood vessels, and brain.
Like many other forms of arthritis, lupus occurs more commonly in women than in men-women develop lupus approximately ten times more often than men do. While it can strike at any age, it tends to occur most often between the ages of 15 and 45.
While the exact cause or causes of lupus remain unknown, there are a number of factors which researchers believe may trigger the disease, either alone or in combination with one another. These include genetics, hormones, certain types of antibiotics and other medications, prolonged and severe stress, viruses, and sun exposure.
Diagnosis of lupus
Because lupus can affect so many different areas of the body, the disease often presents very differently from patient to patient. For this reason, lupus is a disease which is often difficult to diagnose. If you experience three or more warning signs of lupus, you should speak with your doctor about looking into the possibility that you may have lupus.
Warning signs include:
- Swollen or stiff and painful joints
- Loss of appetite and weight loss
- Fatigue and low energy
- Skin rash, especially if brought on by sun exposure
- Ulcers in the mouth and/or nose, usually painless
- Pain in the chest while lying down or taking deep breaths
- Low blood counts, including anemia
While there is no single test for lupus, several blood tests are available which assist doctors in diagnosing lupus. These, combined with other factors such as physical symptoms and sometimes family history, can assist doctors in diagnosing lupus.
Treatment of lupus
If your doctor believes you may have lupus, you will usually be referred to a rheumatologist-a specialist in the treatment of arthritis. Rheumatologists have many years of extra training on top of their regular medical schooling, and are experts at diagnosing and treating lupus.
Once your rheumatologist has diagnosed lupus, there are effective treatments available. While there is no known cure for lupus, treatments focus on controlling symptoms. The goal with any medication used to treat lupus is to bring symptoms under control and bring about remission of the disease. Early treatment minimizes tissue damage, and may also lessen the amount of time a patient needs to stay on high doses of medication.
One simple form of lupus “treatment” often overlooked is using sunblock with a skin protection factor (SPF) of 30 or above. Applying appropriate amounts of sunblock on the face and all areas of skin (the sun goes through thin layers of clothing) 30 minutes before exposure to the sun reduces lupus flares as well as skin cancer.
And finally, maintaining a healthy lifestyle is also a critical part of any lupus treatment plan. Poor diet, lack of exercise, and high levels of stress may encourage flare-ups of disease activity, so healthy eating, gentle exercise, and relaxation are highly recommended.
For more information about Lupus, visit the Lupus Canada website at www.lupuscanada.org.
A conversation with Dr. Janis McCaffrey on life with lupus
ACE has met many amazing mothers who live with arthritis. ACE spoke with Dr. Janis McCaffrey, a general practitioner and mother living with lupus who shared her journey.
Q: What has been your experience living with lupus?
A: I was diagnosed with Lupus at 50 with acute renal failure due to nephritis. I was critically ill and my mother came out to help (it’s supposed to be the other way around!). I could not work. Lupus ‘retired’ me and forced me to give away my practice with more than 2000 patients. After I got off the ‘big’ meds, I had a giant identity crisis and became depressed. How could I suddenly NOT be a doctor? I needed counselling and, thankfully, took and remain on an antidepressant.
To manage my lupus I began a treatment pathway that includes getting deliberate and regular exercise (yoga and tennis for me, but I started with walking!), and having quiet time to consciously set goals. If I can, I read, play chess and many word and number games for my brain. I paint and draw and garden for my psyche. I also have my own book with questions, test results and current medications list to ensure I am prescribed the right medications and maintain good communication with my doctors.
Q: How can caregivers, family, and friends support women living with arthritis?
A: Throw down your calling cards. You’d do it for any of your family and friends, right? My book group and other friends and neighbours rotated a meal to our family as they saw we needed. Extra help with childcare, driving, shopping, ironing, yard work, and handyman chores were appreciated. A friend’s ear is still the best therapy in the world.
Teach your kids to be independent in age appropriate ways: to clean their rooms, do their laundry, take the bus, make their lunches, share household chores. Thank, play with, and treat them regularly.
Partners need to be intimately honest (relationship-wise, sexually, emotionally) and figure out together what to do and what will work. Be brave, and get some help if you need it.
Q: Do you consider yourself a role model?
A: Physicians I learned from were role models whether they wanted to be or not. I think a position of influence always presents an opportunity of being a role model. We act accordingly: professional, inherently teaching to whoever is listening, often the patient, their family, staff, colleagues, and we are always learning from others if we have our eyes and ears open!