World Lupus Day

TOWARDS JUSTICE - Emmeline Aglipay-Villar - The Philippine Star

There are watershed moments that occur in your life that change everything moving forward, moments where there is a clear “before” and “after.” Not all of these moments are bad, and even those moments that come from a disaster or crisis need not define one’s life. But they are moments that create changes that cannot be ignored, changes to which we must adapt, challenges that we may be able to overcome – but which we can never ignore.

The diagnosis of a chronic illness like lupus is one of those moments. A chronic disease is defined as a condition that lasts one year or more and that requires ongoing medical attention; or one that limits the activities of daily living; or in the worst case, both of these things. Unfortunately, lupus is chronic in both sense of the word, a disease where the immune system sees the body’s healthy cells as foreign invaders and attacks them, causing inflammation and harm to the affected organs.

That definition of lupus is always one that is startling the first time you hear it, but is an accurate description of the lived reality, the feeling of helplessness and betrayal when it seems like your body is betraying you time and time again. It’s also the kind of disease where the treatment at times feels worse than the cure – when your own immune system is the enemy, you need to suppress it, which means you leave yourself vulnerable to other diseases and threats – not the least of which is the continuing threat of COVID-19. And when someone with lupus gets sick because their immune system is suppressed, that sickness itself can cause lupus to once again flare up in response, a vicious cycle that is difficult and sometimes exhausting to deal with.

When I was diagnosed with lupus in 2007, there were many things that changed in my life. I was 25 years old then and at my fittest. I ran full marathons and had no existing health issues. All of a sudden I started to experience joint pains. I was also always tired and out of breath. I bore the pain and ignored the other symptoms for a long time until I could no longer perform my work properly so I had to seek help. I found out that I was also severely anemic and spilling blood and protein in my urine.

I was not diagnosed right away. I had to through some incorrect diagnoses and I was not given the correct treatment right away which made matters worse. When I was finally diagnosed with lupus, I was relieved that I could finally work on getting better.

I realize that I took many things for granted, such as going out under the sun or eating whatever I wanted to eat. I had to plan my days around my new vulnerabilities while factoring in the unpredictability of my chronic disease. I have made it this far and managed to adapt my life to these challenges because of the support that I have received from others, and I have done my best to try to make that kind of support available to others in a similar situation through the Hope for Lupus Foundation.

Yet even with that kind of support available within the community, it’s also important to take the time out to remind the larger world about the existence of lupus and the lives and needs of those affected by it, whether this be those who are afflicted with the disease, or those who help and support them. Lupus remains to be a disease that is difficult to diagnose and it can take years of symptoms before a proper diagnosis can be obtained.

This is why events such as World Lupus Day, which we celebrate today, continue to be important, and why the drive to make lupus visible must be a continuing one. The more people know facts about lupus, the easier it will be for people – whether doctors or patients – to recognize its symptoms and get the help they need. It will also make it easier for society at large to take the needs and vulnerabilities of people with lupus into account. For instance, the continued adherence to minimum safety protocols regarding COVID-19 – masking, ventilation, physical distance, health checks – continues to be important even with the low case numbers in order to protect those who are much more vulnerable to the disease, such as those with lupus.

Here are a few other lupus facts to know on World Lupus Day, from the official site:

• Anyone can develop lupus; however, women are particularly at risk with over 90 percent of the recorded persons with lupus consisting of women;

• Lupus can affect any organ system of the body. This includes the heart, kidneys, the lungs and even blood, joints, or skin;

• A recent global survey of people with lupus found 87 percent report at least one major organ affected by the disease.

• Many symptoms of lupus imitate those of other diseases, and can come and go over time. This can make accurate diagnosis difficult.

Lupus, like many chronic illnesses, can be difficult and exhausting to manage. This is why each of us, no matter how strong or resilient, needs to be able to receive help and support. 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.

As I regularly advice everyone, but particularly during this time of the year – if you or someone you love is suffering from lupus or if you believe that someone you know 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.

I have lived with lupus for 15 years now, and I can confidently say that it has not stopped me from living my life to the fullest, from achieving my goals and fulfilling dreams. Although lupus is sometimes difficult to deal with, it is very much manageable with early diagnosis, proper treatment and support.

I have survived and thrived despite my lupus because of people who have helped me. I hope that at least one person who is reading this can be an instrument to provide relief or assistance to someone with lupus.


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