Not just a woman’s disease – Lupus

At the young age of 22, Jonathan Ramirez was starting to feel a lot older than he was. Severe pains cascaded through his body on a regular basis. He noticed that he was losing his hair. A strange rash started to turn up around his eyes, and no matter how many hours of sleep he had gotten the night before, he was completely exhausted all the time. Jonathan assumed his exhaustion was due to his heavy course load as a Florida International University civil engineering student. When his health declined drastically after he got his wisdom teeth removed, he knew then that it was time to check with his physician.

Several tests and vials of blood later, Jonathan learned that he had a low platelet count, along with a positive diagnosis of lupus. Years of puzzling symptoms finally made sense. Jonathan finally had an explanation of his symptoms. He also learned that one in ten people diagnosed with the disease are men. But he was still left feeling confused and alone. “I remember being told that I was a one in a million candidate for the disease, simply because I am neither female nor do I have any family history of the disease,” recalls Jonathan. “Accepting the reality of my situation when I was diagnosed brought a strange weight no muscle could lift. Life and my future became a whirlwind of questions and uncertainties that spread like a fear-driven cancer. How, at that point, was I to adequately measure the important things that must be accomplished?”

Jonathan and his family limited knowledge of the disease, so they turned to The Lupus Foundation of America’s Web site to get the facts. There they learned that there are currently two million people in the U.S. struggling with the disease. The most shocking statistic for many people to learn is that lupus affects more people than cerebral palsy, multiple sclerosis, sickle-cell anemia and cystic fibrosis combined. Yet often, when people hear the word “lupus,” they have no understanding of what it means.

To bring about awareness of the disease, its symptoms, who is affected most by it, and its treatments, May has been designated Lupus Awareness Month. In the past few years, many people have noticed an increased number of billboards, public service announcements and commercials. These are directing patients, family and friends to different lupus organizations where they can learn more. Through the media and social networking Web sites, word is getting out. As more and more people are finding out, lupus is an autoimmune and chronic inflammatory disease. It attacks the victim’s organs, such as the heart, lungs, brain and kidneys, and also causes other symptoms, such as rashes, fevers, joint pain, anemia and photosensitivity. Although medication is helpful, there is currently no cure. The disease can be fatal for some, and patients haven’t had any new medication or treatment options for the disease in over 50 years.

For people like Jonathan, learning of the diagnosis and adjusting to life accordingly has been a difficult process. “I find that lupus is like an uncomfortable smell lingering in the air of a room,” explains Jonathan. “People never really know what exactly to say when they find out that you have it, or how serious to take it. During these awkward moments, they tell you it isn’t a big deal, but I think to myself, ‘Are you really going to tell me this isn’t a big deal?’ I have had to change certain aspects of my life and set a new standard of normal for myself and the things that I do everyday.”

Adjusting to his new life and determined to finish his civil engineering degree, Jonathan was excited when he stumbled across the Michael Jon Barlin Scholarship, given out by the Southeast Florida chapter of the Lupus Foundation to afflicted students in South Florida. Michael, the late son of Judy and Wayne Barlin, was a bright and driven young man who lost his battle with lupus at the age of 24. Though he dealt with the exhausting and devitalizing effects of the disease on a regular basis, Michael was still able to complete a B.S. degree with honors at the University of Miami. The $5,000 scholarship, offered annually in memory of Michael, was given to Jonathan this past year, after he applied through the Lupus Foundation’s Southeast chapter’s Web site.

“This scholarship has been an excellent help in my life both economically and psychologically. I remember reading the bio on Michael and feeling this great weight come off my shoulders. I said, OK, I can still go to school. I would return to Michael’s story regularly and feel compelled to fight on and continue as I knew he would have. I felt that I could move mountains. Not all the Prednisone in the world could make me feel how I did when I knew that I had the Barlins and the whole Lupus Foundation organization behind me,” recalls Jonathan.

Recently inducted into the National Civil Engineer Honors Society, Jonathan reflects on where he was just two short years ago after his diagnosis, how far he has come and the advice he would like to give others who may find themselves in the frightening situation of a sudden diagnosis in the future. “I believe having faith is a good thing. Keep in mind how awesome some things in life are and enjoy certain things that much more,” shares Jonathan. “You are not as alone as it seems.

There are other people out there who understand what you are going through. Instead of looking at lupus as a disability, I now look at it as a stepping-stone. As long as I am alive, I will continue to fight and set an example for everyone who dreams of success. The only difference is I do not have any dreams. I only have goals. Like one of my favorite artists says in his song, ‘No Regrets’: ‘I ain’t never had a dream in my life, because a dream is what you want to do, but still haven’t pursued.'”

To learn more about lupus, its symptoms and treatments, the Barlin Scholarship and support groups that are available in your area, please visit: www.lupusfl.org.
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