Make lupus visible

TOWARDS JUSTICE - Emmeline Aglipay-Villar (The Philippine Star) - May 11, 2021 - 12:00am

There are few things that frighten people more than the unknown. A 2016 study indicated that the fear of the unknown may be at the root of most fear-based psychopathologies. Ignorance is not bliss, especially if you know that a threat is out there, and what you are ignorant of is the form it will take, when it will strike or how best to fight back.

This is why the first line of defense against the new threat of COVID-19 was information – to learn about it and make sure what we learned was spread far and wide. This is how health protocols were developed, this is why vaccines were able to be researched, tested and produced at such an unprecedented pace.

While the threat of the virus is still very much present, it is only through accurate medical information that we are given a chance to hold the line. When we know more about a threat, we see it more clearly and can plan more accurately – to make something visible is the first step in dealing with it.

This is why the theme of this year’s World Lupus Day is this: “Make Lupus Visible.” World Lupus Day, celebrated on May 10, was established in 2004 by the Lupus Foundation of America on the occasion of the 7th International Congress on Lupus and Related Diseases, and it’s a yearly opportunity to call attention to the impact that lupus has on people around the world, an impact that often goes unmentioned or underestimated. Part of this may be because lupus is not a new disease: the name of the disease – supposedly because the “butterfly rash” on the cheeks of some with lupus appear similar to the facial markings of a wolf – was given in 1851, but there’s evidence of disease dating back to ancient Greece.

Another part of the reason is that those afflicted by lupus are predominantly women, and it is a sad reality that conditions which mostly affect women have historically received less attention than those which predominantly affect men, or which affect both equally.

But this is all the more reason to shine the spotlight on lupus, because there is so much we still need to know about the disease. One of the reasons that lupus can be so frightening is that even if it is an ancient illness, we still do not have a clear idea what exactly causes it (likely to be a mix of a variety of factors involving environment, genetics and hormones) or what triggers its cycle of surge and remission. Diagnosis can also be difficult, and while more is known now than in the past, without the proper education or information campaigns it can be very difficult to know what series of symptoms to look for. Even when a positive diagnosis has been made, access to medication and regular clinical care is important to properly managing the effects of the unpredictable disease.

But the COVID-19 pandemic has made that difficult for many with lupus. A recent global survey conducted by the World Lupus Federation revealed some worrying data:

• Half of the survey participants (50 percent) reported decreased access to at least one aspect of lupus health care in the last three months due to the COVID-19 pandemic;

• 36 percent reported decreased access to their lupus doctor/rheumatologist;

• 29 percent reported decreased access to medical tests for lupus;

• 24 percent reported decreased access to infusions for lupus;

• 17 percent reported decreased access to lupus medications.

Also, while lupus as an auto-immune deficiency (or immunodeficiency) makes those with lupus fall under the comorbidities priority group for vaccination in the country, a third of the respondents surveyed were not categorized in their nations as being able to receive the vaccine ahead of the general population.

Because of the lack of awareness about lupus, many do not understand how those with lupus are at an even more vulnerable position during the pandemic. Many do not even know what lupus is. Lupus is a disease that occurs when your body’s immune system attacks your own tissues and organs. It causes inflammation that can affect many different organs in the body – including your joints, skin, kidneys, blood cells, brain, heart and lungs.

Living with a chronic illness like lupus is challenging. What do you do when your enemy is your own immune system that is trying to shut down the other organs in your body – when your body is constantly at war with itself? The treatment is to suppress the immune system, which causes a whole set of problems. It makes us even more susceptible of getting sick and when we get sick it causes our lupus to flare up that can leave us at a worse state than when we started.

Even prior to the pandemic, people with lupus, like me, were constantly worried of getting sick because of our low immune system and more so now when the highly infectious COVID-19 has been threatening the world.

Lupus is a difficult condition to manage, but from my own experience I know that it is possible if you have help. And I’ve made it part of my life’s work to help ensure that kind of help is available to those who need it.

If you or someone you love is suffering from lupus or is someone you believe may be suffering from lupus, you may send a message to @HopeForLupusPH in Instagram and Facebook to ask for assistance. The Hope for Lupus Foundation provides support to people with lupus and their families.

But something else that is of the utmost importance is what I began this column with: information and visibility. We cannot allow lupus-specific needs to be buried beneath our anxiety over COVID-19 or other issues, just as when the mania for hydroxychloroquine (HCQ) as some sort of miracle drug made it unnecessarily difficult for lupus patients to acquire a medicine that is essential to their lives. We cannot stop amplifying demands for swifter lupus drug development, for better clinical care and for more research into the causes and treatment of a disease which still affects the lives of millions.

Lupus is still here, and those who live with it are still here. See us. Hear us. Help us.

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