Lupus World Day: Let the Awareness Commence

 My fellow readers, as you have the opportunity of noticing, I seldom take my blog to write about personal issues or feelings, simply because what I have to say here doesn’t mesh with my personal life. Having said this, it was impossible for me to ignore the necessity I felt to address lupus, which, ironically, breaches into the deepest part of me.

As some of you may know, the Lupus Organization of America has marked May as the Lupus Awareness Month and May the 10^th as the World Lupus Day. During the whole month, and with a combined effort from the organization, supporters and specialists, content is created with the specific purpose of making the disease known. It is a month dedicated to create awareness for people who don’t know about lupus and for family and friends who struggle understanding the whole meaning of the disease. This, I think, is pretty rad.

And you may ask yourselves, why does she care so much about this? There are a million other diseases that plague the world, why this? Well, the answer is simple: I was diagnosed with Systemic lupus erythematosus in October 29 of 2007 when I was 18 years old. I remember the date perfectly well, because it is a day that changed my life forever and opened my eyes to a whole new world. I didn’t even know what Lupus was before I was diagnosed and suddenly, in the blink of an eye, this new world had fallen on me. From one day to another I had to completely change my lifestyle and create new habits.

To be honest, it is hard for me to talk about this and I usually prefer not to. It is sad for me and people get uncomfortable or think you are throwing a pity party for yourself. “You seem fine, you are fine,” they seem to think.

So as a result, for many years I tried to block what was happening until I realized one thing: this illness does not define me as a person. Yes it is part of who I am, but just a part of me, not the whole package. I realized how liberating it was to tell someone what I was feeling and above all, I realized it became very important to me to create awareness. Damn people if they became uncomfortable or condescending, I was done with the silence.

That feeling brings me to write to you today. I finally got that if people don’t grasp what this means they never will be able to understand me. So for my sanity and the sanity of my friends, family and people I love I wanted to do this.

One of the first things I noticed when I was diagnosed is how little information I had of my own disease. I had to learn quickly, but as I ventured into the world, I also noticed that people were even more clueless than I was. I got all kinds of reactions that went from pitying pats in the back, to people being afraid they might catch the disease if they got close to me, to the truly supportive, to the wanna be doctors who disagreed with my rheumatologist and told you me to do things “right”.

But, facts are facts and they are important to understand lupus. Systemic lupus erythematosus is and systemic autoimmune chronic disease. This basically means that your body creates antibodies that it does not need and they attack your healthy organs: lungs, kidneys, thyroid or even the heart. This type of lupus is characterized by having periods of remission interrupted by flares that can happen randomly or by neglecting treatment. SLE is treatable using immunosuppression, mainly with cyclophosphamide, corticosteroids and other immunosuppressants, but as of today, there is no known cure for it.

Symptoms can vary and it is very difficult to diagnose, because many of them mimic symptoms of other conditions. For example, it presented in me with a drastic weight loss, vasculitis on my fingers, -which my dodgy dermatologist thought was an allergy- and fatigue, which is the symptom that I most struggle with today. Other common symptoms are joint pain, a butterfly shaped rash on the cheeks and fever. The disease is more common in women, but I can also affect some men.

Lupus is a very strange and mysterious animal. Not enough research or understanding has come to know why it happens and how we stop it. Sometimes it is genetic and sometimes it appears in a person with no genetic disposition for it. It is confusing and many times, misdiagnosed.

Even though I’ve been in remission for the last 4 years, it is scary to feel so out of control of your own body. Even following the treatment and the protocols to perfection a flare could occur. That is why awareness is so important, this needs to be known for it to be studied more and finally comprehended totally. Each year more people are diagnosed with lupus and a cure hasn’t been discovered. I believe any person who has this disease feels the same fear I do and this is why I’m putting this out there to try and help, even in a small way, to stop that fear.

So, I invite all of you to go and try to learn more about this disease. Today, May 10^th, we can open a new page and hope that more researchers will be interested in this and help by investigating in order to create better lifestyles for people with lupus.

Visit: http://www.lupus.org/ for more information and let the awareness commence.