Selena Gomez, pop star and then a 25 year-old singer/performer, shocked her 130 million Instragram followers in 2016 by posting her photo after having a kidney transplant. She has systemic lupus erythematosus (SLE) or “lupus.”
SLE or lupus is a chronic (long-term) illness. It is a condition wherein the body’s immune system, which is supposed to protect it from infection and disease, turns on itself and attacks the body’s cells and organs, thinking these are foreign. It is like when soldiers get confused and instead of going after the enemies, they attack what they are supposed to protect. It is therefore “auto-immune” in nature. SLE can present itself in different ways and, like thumbprints, no two patients are exactly the same. It can be very mild, or bad enough to cause hospitalization. It may even lead to death, especially if left untreated.
How prevalent is SLE? Who are usually affected?
SLE or lupus is found in millions of people worldwide. In the Philippines, lupus occurs in around 30 to 50 per 100,000 people, while in the United States, it is reported to affect 20 to 150 people in every 100,000. Also in the United States, there are more Asians, Hispanics, and African-Americans who have lupus compared to Caucasians. Lupus is more widespread than what most people think.
Lupus is more common in young women—around 9 in 10 adults living with lupus are women. Majority of the patients usually exhibit symptoms between their 20s to 40s, in the “reproductive age,” when they are capable of getting pregnant. SLE can also affect men, the elderly, and even children. It is more widespread than most people think. It is therefore important to be aware of lupus and its symptoms.
What causes SLE?
The exact cause of lupus is still unknown despite decades of research. It appears to be influenced by several factors. Having certain genes inherited from your parents (even if they do not have this disease) seems to predispose someone to this illness, as seen in studies where up to 50% of the lupus patients’ identical twins also carry the same disease, and those with first-degree relatives (like parents and children) with lupus have a higher chance of developing this, too.
Lupus then develops in genetically predisposed individuals when exposed to a “trigger.” Many environmental triggers, such as exposure to the ultraviolet rays of the sun, fluctuating or excess hormones, certain food such as alfalfa sprouts, some medications, infections, being pregnant, and stress (physical, mental, and emotional), have been thought to create the setting for the disease. Antibodies to self (auto-antibodies) develop and bind to any structure of the cells of the body (antigens) forming immune complexes.
These deposit in the body’s organs and harm them. Both auto-antibodies and immune complexes can wreak havoc to any part of the body, including the skin, muscles, bones and joints, blood, kidneys, lungs, brain, and even the heart.
What do you feel when you have SLE?
Lupus can involve the skin, muscles, bones and joints, blood, kidneys, lungs, brain, and even the heart. This may result in damage to the affected organs.
The more common symptoms of lupus include the following:
- Unexplained fatigue
- Rashes, especially across the cheeks and bridge of nose
(usually caused by sun exposure), called the “malar rash” or the “butterfly rash” rashes, including malar rash
- Shortness of breath
- Aching or painful joints and muscles
- Frequent mouth sores (“singaw”)
- Unexplained fatigue, or being “low-batt”
- Excessive hair loss and even balding
- Pale skin
- Fever without a known cause
- Fingers that turn white/blue with cold exposure One, some, or all of these mayoccur in people with SLE.
One, some, or all of these may occur in people with lupus.
How do I know if I have SLE?
SLE is challenging not just to patients but also to physicians. It is not very easy to diagnose because it can present in many different ways depending on the involved part of the body.
The diagnosis of lupus has improved greatly in the past decades due to several factors, which include increased awareness of the condition, well-defined diagnostic criteria, and highly specific laboratory tests for the disease. If you know someone who has the symptoms mentioned above, encourage him/her to consult a rheumatologist (a specialist of lupus and other arthritis). If there is none in the area, it is good to consult internists, family practitioners, or other specialists who will guide you to the proper medical facility and practitioner. Blood tests, such as complete blood count (CBC), creatinine, anti-nuclear antibody (ANA); a urinalysis; and others may be requested, and the results will be interpreted along with the person’s signs and symptoms. Sometimes it is difficult to diagnose lupus because it may have the same symptoms as with many other illnesses, therefore consulting a rheumatologist is the best thing to do.
Is there a cure for lupus?
Much like most other chronic illnesses, such as hypertension and diabetes, there is no known cure for lupus. However, it can be managed and controlled. With proper treatment, patients with lupus have an excellent chance to live healthy and normal lives. There are medicines that are used to control the symptoms of lupus to make the patient feel well, and even induce remission, as if lupus is not there. These may be taken by mouth or can be injected, and will be prescribed by the doctor once a diagnosis of lupus is made. It is important to avoid self-medicating and use of unprescribed “medicines” or “herbals” that may potentially do more harm than good.
What else can I do to help avoid lupus symptoms and complications?
If you are already diagnosed with lupus, practice sun protection. Try to stay out of the sun, use an umbrella, and apply sunscreen with at least SPF 30. There is something about the ultraviolet rays of the sun that causes damage to the cells and can lead to a flare of lupus symptoms. Note that this happens ONLY in people with lupus.
Since you will be hiding from sunlight and will most probably have at least some steroids in your medicine list, taking adequate calcium and vitamin D, either naturally through food intake or supplements, is recommended. Try to get a good number of hours of sleep at night. Try to avoid stressful environments. Stress has been found to worsen lupus symptoms and trigger flares.
What else can I do to cope and live with lupus?
There are presently over 100 rheumatologists in the country, and three of them are in CMI. To schedule an appointment with our board-certified rheumatologists, contact us at 02. 8812 . 1CMI | 02.8816 . 1035 – 36 or email us at experience@cminternationale.com
Support for people with lupus is likewise very important. Ask your rheumatologist for any “lupus club” in your vicinity. There are several in country, and these exist to create awareness of the disease, provide social support, and impart tips for self-help and even livelihood programs — for people living with lupus.
About the author:
Dr. Geraldine Zamora is one of our rheumatologists in CMI. She was awarded as the Ten Outstanding Young Men and Women (TOYM) for Medicine in 2016. She was class valedictorian of the University of the Philippines College of Medicine and now serves her alma mater as a Clinical Associate Professor. She is also a board member of the Sagip Buhay Medical Foundation, Inc., the Vice-President of Hope for Lupus Foundation, Inc., and co-author of the book, Living with Lupus, available in major bookstores in the Philippines.
Dr. Geraldine Zamora practices at Centre Medicale Internationale (CMI).
Contact us at 02. 8812.1CMI | 02. 8816.1035 or 36 or email us at experience@cminternationale.com to schedule your appointment with her.