By MARILYN MANA-AY ROBLES
ROCHELLE, a young lupus patient of 8 years, received a text message from the president of the Lupus Foundation reminding her of their regular 1st Saturday of the month meeting.
She responded “ gustong gusto ko umattend kaya lang mahina pa ako. Minsan ba nakaramdam ka ng para kang nawewengdang?” (I would very much like to attend but I am still weak. Have there been times when you felt like you were going crazy?) The president, herself a lupie of 20 years replied, “Ay, naku, oo naman. Hindi mo maintindihan kung anong mali sa yo. Pero lilipas din yan.” (But of course, I have. You can’t understand what is wrong with you. But that will pass.)
Ah, lupus. Such an arrogant sounding disease! It is complex. It devours a patient’s physical well-being and causes them to be emotionally battered. Sometimes, a patient even looses her/his grasp of reality.
The Lupus Foundation of American describes lupus as a cruel mystery as it is hidden from view and undefined, has a range of symptoms, strikes without warning and has no known cases and no known cure. Its health effects range from a skin rash to a heart attack. Lupus is debilitating and destructive. It can be fatal.
There are four kinds of lupus. They are neonatal lupus, discoid lupus or lupus of the skin, drug induced lupus and systemic lupus erythematosus (SLE). When people speak of lupus they usually refer to SLE. Systemic lupus erythematosus is difficult to diagnose because its signs and symptoms mimic those of other ailments. The most distinctive sign of lupus however is a facial rash that resembles the wings of a butterfly which unfolds across both cheeks. This occurs in many patients but not in all cases of lupus.
No two lupus patients manifest the same symptoms. Each patient is distinct from the other.
Some people are born with a tendency toward lupus which maybe triggered by infection, certain drugs or even sunlight.
While there is no cure for lupus, treatments can help control symptoms. Immunosuppressive drugs are predominantly used. In 2011, after 50 years of research, the Food and Drug Association of America approved the first drug for lupus: Belimubab.
Worldwide, there are five million individuals with lupus. At least 70 percent of those diagnosed are afflicted with systemic lupus erythematosus or SLE.
Lupus affects people of African, Asian and Native American descent three times as often as it affect whites. Nine out of 10 people with lupus are women.
In the Philippines, there are over 2,000 lupus patients nationwide. The most famous lupus patient in the Philippines was the late President Ferdinand E. Marcos.
Lupus is a lifelong disorder. To enhance understanding and appreciation of the disease among patients and their caregivers, various lupus support groups have been formed throughout the country. They are found in Iloilo, Bacolod, Cebu, Davao, Baguio, SocSarGen, Manila and South Luzon.
It is imperative that a lupus patient is well informed of the disease to enable her/him to carry on a meaningful and productive life despite the profound physical and emotional demands imposed by lupus.
Here are three suggested coping mechanisms addressed to individuals with lupus to make their lives worth living still.
- Brace yourself for the unexpected. Lupus can affect just about any organ of your body. Your defense mechanism is weak. You cannot predict your physical well being. You can feel tired one moment and be energetic the next minute. Keep calm. Relax. Think beautiful thoughts. Such is lupus.
- Brace yourself for the worst. Lupus can cause havoc in your body. You may need to have a blood transfusion not only once but maybe eight times. You may have to sleep while seated because as your back muscles ache badly thus preventing you to lie down. You eyes may need surgery because of cataract or glaucoma. You may be required to take massive doses of prednisone to keep a bad flare at bay. Worse, these things can happen all at the same time. Keep calm. Relax. The worse is yet to come. Such is lupus.
- Brace yourself for the inevitable. When your whole body is ravaged by lupus and you can no longer master enough strength to bear the pain, pray. Pray that your loved ones be spared of further financial burden because of lupus. Pray fervently that God will take pity on you and finally allow you to suffer no more. Keep calm. Relax. Let go. Such is lupus.
In the end, it is accepting the existence of lupus in one’s life that spells the difference.