One of the first steps in dealing with a lupus diagnosis is realizing you’re not alone -- that there are other people out there going through much of the same thing. Sharing stories and offering advice through support groups, both online and off, is one way many of those afflicted with lupus deal with the day-to-day struggles associated with the disease.
Our hope at About Lupus is to offer support in whatever way we can. That’s why we hope spotlighting courageous women and men afflicted with lupus will give someone out there who has been newly diagnosed, is having a tough moment with their disease, or maybe just wants to know there’s someone else out there who understands what they’re going through, the lift they need.
One such person who may help you is Alicia Springgate, a Washington state resident and Las Vegas native who was diagnosed with lupus after recurring bouts of pleurisy, lung effusion and congestive heart failure.
I spoke with Springgate about her experiences.
About Lupus (LUP): How did you get diagnosed?
Alicia Springgate (AS): Once I was placed in the ICU, my lung specialist realized that my [current] symptoms, as well as symptoms I experienced in the past, were likely the result of systemic lupus erythematosus (SLE). All the tests came back positive for lupus. After diagnosis, I was immediately treated with steroids, which improved my condition fairly quickly.
LUP: What went through your head when you found out?
AS: No one would tell me what lupus was or what to expect, and so I was very scared and knew it must be bad. Then I did my own research, and the results scared me: I realized I had 9 of the 11 symptoms used to diagnose the disease. I later discovered that I have a very serious, life-threatening form of the disease.
LUP: What kind of options were offered to you, medically, regarding treatment?
LUP: What kind of treatment did you pursue?
AS: All that was provided. I eventually had so many side effects, I had to increase my medications to combat those side effects. [I went on] things like heart pills, blood pressure medication, pain medications, seizure medications. Now, the list is up to about 28 medications a day.
LUP: What has surprised you most about lupus?
AS: That it is such a devastating disease that affects all parts of your life.
LUP: Have you found any support in your community or online that has been helpful? If so, how has it helped you?
AS: The Lupus Foundation of America (LFA) has been the greatest help as it has made me aware of ongoing research, what options I might have for treatment, what others are going through, and how I might help others.
LUP: Is your family aware of your diagnosis? In what ways have they been helpful?
AS: My family has been extremely helpful, from the day I was diagnosed. They went online, conducted their own research, and bought my medications when I couldn't afford them. They drove me to California so I could be treated at the best hospitals available and have been my caretakers for the last three years. They are my lifeline.
(Editor's Note: Alicia's mom describes what it's like to be the family member of someone with lupus on page 2.)
LUP: What advice would you give someone who just found out they have lupus?
AS: Arm yourself with all the research you can gather and the most current treatments offered. Doing research, educating myself, was my saving grace –- until I found a doctor who was honest and compassionate. He also wasn’t afraid to ask questions of other medical experts when something regarding my illness cropped up and he wasn't familiar with it.
Also, find emotional support, whether it is through a licensed therapist, a church support group, or a local support group. I don't think I would have made it through had it not been for that support.