I can remember the first time I heard the word “systemic lupus erythematosus” (SLE or lupus).
In one of my first blogs, I briefly shared the story about meeting a girl during my time at medical school. She had complained of several months of joint pain and swelling, extreme fatigue, and mild hair loss. She had told me that she had been diagnosed with lupus. At that time, I knew very little about the disease. She and I were both unaware of the association of early heart disease, lung disease, brain involvement or kidney damage. We found out that can occur with SLE if early and aggressive treatment is not taken to control disease activity.
BEING A MEDICAL STUDENT
As a medical student at that time, I also didn’t understand how serious this disease could be. She sadly passed away from complications of the disease. After medical school, I treated numerous women and men who also have never heard about this disease. They have limited knowledge about diagnosis and treatment. During my residency, I decided to pursue a rheumatology fellowship. It has become my mission and focus in my clinical practice to raise awareness of this complex autoimmune condition.
LIVING WITH LUPUS
I have so many positive stories of people who live with this diagnosis every day and are living incredible lives. Rece tly I attended a cosmetic workshop in NYC. I was paired with a makeup artist after the workshop. She appeared to be so energetic, vibrant, and not to mention gorgeous. We instantly connected. She told me that she had been living with SLE for many years. We proceeded to talk for the next hour about how she grew up coping with the disease. She refused to let this disease control her life. I found out how she was diagnosed in college. She had complaints of joint pain and chest pain from inflammation around her heart.
HER DISEASE WAS COMPLICATED
Her disease was complicated by kidney failure requiring. Weekly dialysis and eventually two kidney transplants because her first one was complicated by a blood clot. She eventually had a successful second kidney transplant and received treatment. In the form of steroids, chemotherapy (cyclophosphamide) and other agents. The last time I saw her she was on a regimen. Of low dose steroids and anti-rejection medications for her transplant. It was so great to see this amazing professional. In one of the best cosmetic companies of the world stand before me after enduring two kidney transplants. This woman was a perfect example of how aggressive treatment, a healthy lifestyle, a supportive physician and social network, as well as a positive outlook on life can help control the disease despite flare ups.
KEEPING A POSITIVE OUTLOOK
Many years ago, I encountered another brave woman living with lupus who started her own website, LUPUSCHICK (lupuschick.com). I became involved with one of her projects and I am always amazed how this female has dedicated her time arising awareness for people living with lupus and other autoimmune diseases while personally battling this disease.
Although I have seen the ugly side of this disease, I have also witnessed many success stories. I mainly see women, but men as well, who live with the strength and courage to wake up every day and fight this disease by keeping their disease activity in remission with the help of caring physicians, potent medications and healthy lifestyle modifications. There are effective therapies to help women and men live productive lives, but the benefits and risks must be discussed with a physician.
LUPUS IN THE MEDIA
There are so many role models living with SLE in today’s world. In recent years, the attention to lupus has been increasing.
Sensational singer and actress Selena Gomez told the public in 2015 that she was diagnosed with lupus and took some time away from the spotlight to treat her lupus with chemotherapy (which can be used to help control inflammation for this disease). In 2017, she again highlighted her struggle with kidney disease due to her complications with lupus. She opened up about the necessity for a kidney transplant in late 2017 on Instagram. During a television interview, she admitted that she didn’t want to accept that she had lupus initially, like so many other women and men.
After her transplant, she has gone on to excel in her singing career and has become an outspoken advocate. Rapper Snoop Dogg’s daughter was seen on the “View” many years ago opening up about her battle with juvenile lupus. Toni Braxton has spoken candidly on Dancing with the Stars and mainstream media about her battle with lupus and early heart complications. Since being diagnosed with lupus and nephritis (kidney disease) in 2012, entertainer and television personality Nick Cannon has also taken the opportunity to educate more people about this complex disease. As you can see, anyone can be affected.
GETTING INVOLVED
Every day when I go to work, I keep the faces of the individuals that I have cared for in my mind and in my heart. These patients inspire me to increase awareness about the clinical symptoms, diagnostic evaluation, and complications like heart disease and diabetes associated with this disease. By participating in the Arthritis Foundation walk and speaking out about this disease, I know I can be a patient advocate for this community.
Thank you for taking the time out to read this story and share it with any male or female that may have symptoms suspicious for lupus. Stay tune to my next blog for this information. That individual should be referred to a rheumatologist and follow up every few months. Most people can live normal and productive lives but the disease is chronic and can be challenging in terms of activity limitations and quality of life with flares. Individuals must take an active role in their treatment plan and find support with family, friends, health care professionals or other individuals living with the disease. There is so much hope for a future cure!
You can read more details of my personal experiences highlighted in this blog with lupus patients in the ebook LUPUS-REAL LIFE, PATIENTS TALK by Marisa Zeppieri-Caruana and check out Marisa’s website lupuschick.com
LUPUSCHICK is partnering up with another organization to offer an educational enrichment award for those students living with lupus and enrolled in college, technical school or certification program.