This is Why Lupus Changes Everything.
It is here – the month we all get together to talk about SLE (Systemic Lupus Erythematosus) and get it out of our heads.
It is immensely hard, painful, and even a little embarrassing to openly talk about lupus in public. Nevertheless, we need to face this challenge and make it real. Many of my friends were surprised when I shared my story in my recent blog; I am Hope.
Similarly to cancer a few decades ago, the lupus word carries such a heavyweight that people who experience it, do not want to talk about it.
People need to know that being down with lupus is not a cold or the flu. It’s not contagious, it won’t improve, it won’t go away, a nap won’t help, there is no magical treatment, and it does not have a cure yet.
We mask our symptoms with fake smiles, and by pretending the pain is not real, we pray it will disappear, but most of the time, it doesn’t.
Lupus is a mysterious illness, not only because the cells that are supposed to protect our bodies from viruses and bacterias attack our organs and systems, but also because for each person, the symptoms can be different regarding type and intensity. People with SLE can experience fatigue, frequent fever, weight loss, rashes, and unbearable pain, among other things –which makes this disease difficult to diagnose.
Facts Regarding Lupus
- Approximately 1.5 million Americans have a form of lupus.
- Systemic lupus erythematosus cases make up 70% of total lupus cases.
- Of individuals diagnosed with lupus, 90% are women.
- Eighty percent of people develop lupus between 15 and 45 years of age.
- Lupus is two to three times more prevalent among people of color.
- The chances of a parent or sibling of someone with lupus having or developing lupus are 20%.
(Source: Lupus Foundation of America)
There are no single diagnostic test rules in this disease. Thus, on average, it takes about five to seven years for a person with SLE to receive a proper diagnosis. Meanwhile, the condition damages the organs and, in some cases, ends up affecting a person for life.
It completely changes the way we live and relate to the people around us. The current rule of wearing a face mask when going out, washing hands frequently, having purell at every corner of the house, and avoiding touching our faces was already a reality for many of us, including myself. Going to the hospital monthly for routine treatment, having multiple doctor appointments each month is part of every lupus warrior schedule. Dodging crowded areas and not hanging out with people who mildly sick is my life. Does this sound familiar to you now?
We get caught in fear of getting sick because any invisible bug can put us in bed for weeks or maybe even months.
We face incredibly high health care bills, multiple prescriptions, and expensive medicines. One of my medications, a subcutaneous drug I take weekly, is about US$ 1,000 each dose. That means a brand new BMW a year that I am not driving.
I invite you to talk about the disease with others in your community. Let’s bring this subject to the surface and together embrace the find for a cure. This effort may be the hope for millions of people that cannot see the light at the end of the tunnel as they approach adulthood.
SLE can be both debilitating and life-threatening; the disease can significantly affect the quality of life. Patients with SLE experience increased fatigue, pain, rash, fever, abdominal discomfort, headache, or dizziness, which can present at the onset of a lupus-associated flare. Life expectancy depends on the extent of organ damage at the beginning of treatment. An early diagnosis can improve the prognosis. The 20-year survival rate for patients with SLE is 70%. If the disease is left untreated, the brain, heart, lungs, kidneys, and other major organs may be compromised. (US National Library of Medicine)
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