Hope for lupus

May is international lupus awareness month and tomorrow we celebrate World Lupus Day. You might think – what is there to celebrate? Why do we celebrate an illness that afflicts millions of people around the world and thousands of people in the Philippines? One might think it is hardly a happy event for someone to have an incurable disease that causes inflammation and pain. I surely was not jumping for joy the day I was diagnosed with lupus but through the 16 years of living with lupus, I have found that it has brought many good things to my life.

First things first – what is lupus? The Mayo Clinic has defined lupus as “a disease that occurs when your body’s immune system attacks your own tissues and organs (autoimmune disease).” It causes inflammation in the body that can affect the organs of the body – the joints, skin, kidneys, blood cells, brain, heart and lungs. Normally, a healthy immune system protects the body against bacteria, virus, infection and disease; however, when one has lupus, the immune system attacks its own tissues and it causes the disease instead of helping to get rid of it.

Lupus is not contagious. One who has it was, from the beginning, genetically predisposed to have it but environmental factors still contribute in causing it. People with an inherited predisposition for lupus may be exposed to environmental triggers that may potentially cause the lupus. According to the Center for Disease Control and Prevention, environmental triggers include sunlight or close exposure to fluorescent or halogen light, being overworked and lacking rest, infection, injury and some types of medication.

I was 25 years old when I was diagnosed with lupus. I started to experience some of the symptoms like joint pains, rashes all over my body, high blood pressure, hair loss, edema, unexplained fevers, weight gain, shortness of breath and fatigue for several months until I could no longer carry on with my daily activities. Walking was painful for my knees and hips. Opening doors, writing or typing and using utensils to eat was excruciating since the joints on my hands were the most painful of all the joints in my body. I found out that I was out of breath because there was very little oxygen in my blood and I was feeling weak because the red blood cell and platelet counts in my blood were low. I also retained water because the lupus had already affected my kidneys and this caused me to have high blood pressure; to gain weight and for my legs, feet, hands and face to swell. My kidneys were also leaking blood and protein in my urine.

Like many other people who have lupus, it took quite some time before I was correctly diagnosed. Lupus can be difficult to diagnose because its symptoms often mimic other illnesses. The most distinctive sign of lupus is a rash – called a malar or butterfly rash, that runs across the face and is shaped like a butterfly with the wings on each of the cheeks. I also experienced having a malar rash, which usually comes out when I get exposed to the sun. However, even though a lot of people with lupus experience having a butterfly rash, not all lupus patients have it. Other symptoms of lupus include mouth sores, memory problems, blood clotting, chest pains and muscle pain. The symptoms vary from one lupus patient to another and no two cases of lupus are exactly the same.

If you or any one you know may be experiencing some of the symptoms of lupus, it is best to consult a rheumatologist, a doctor who specializes in the diagnosis and treatment of systemic autoimmune conditions, including lupus. The early diagnosis and treatment of the disease will be able to help in improving the symptoms and will be crucial in preventing other complications and problems caused by lupus. Contrary to what some might think, lupus is not a terminal illness. According to lupus.org 80-90 percent of people with lupus can expect to live a normal life span. Although, at the moment, there is no cure for lupus, the prognosis for lupus is better than before due to advances made in research and medical science.

Lupus patients can and do live normal lives and I am living proof of that. I encountered some challenging times due to my lupus, and there was one time that I thought it would be the end of me, but I made it! I have been living a full and fulfilling life. I have not been merely surviving – I am thriving! I am able to pursue my legal career and advocate for causes close to my heart. I was able to have a daughter even though the doctors said it would be very difficult. I am able to engage in sports and enjoy regular physical activities. Lupus has not hindered me from pursuing any of my dreams.

For anyone living with lupus and those who have a loved one who has lupus, know that there is much hope. It is a manageable disease. It is certainly not a death sentence, especially if it is diagnosed early, if the lupus patient is religious in taking medication and is regularly monitored by a doctor. However, because of the lack of awareness about lupus, many people who have the disease have not been diagnosed yet. Also, many people with lupus cannot afford to take the medication, which they may need to take for the rest of their lives. This is one reason why the condition of many lupus patients worsen. I am blessed that I am able to afford the treatment but I know many people cannot, that is why I have made it my mission to help people with lupus.

Living with lupus may be difficult at times but it has given me a most precious gift. It has given me perspective, a clear sense of my purpose and an inner strength that I would not have otherwise had. When faced with the realness of mortality and the imminence of death, each moment becomes more precious, there is no time to waste on things that don’t matter and gratitude and hope always fill my heart.

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For information on how to help, you may check hopeforlupus.ph and facebook.com/luisaproject/