Holly is a lupus warrior who has dedicated herself to raising awareness and funds to help end lupus. Since her diagnosis in 1993, she has found creative ways to bring her community together in support of the cause.
Your Life With Lupus
Q: When were you diagnosed with lupus? How long did it take you to get diagnosed?
I was diagnosed with lupus in the fall of 1993. Within two weeks of seeing my doctor, I had confirmation that it was indeed lupus.
Q: What were the symptoms that finally led to your diagnosis?
I took a mini vacation to SeaWorld and Geauga Lake in late August. Upon returning, I had a terrible sunburn—or what I thought was sunburn. The burn wouldn’t go away, and I thought perhaps it was sun poisoning. Then I started getting joint pain in my knees and ankles. I would come home from work and just lay on the floor because I couldn’t move. I would crawl to my room at bedtime to sleep.
After a while, my mom made an appointment with my dermatologist. During the visit, my mom told the doctor how I had joint pain with the so-called sunburn. One look and he said, “It’s lupus.”
Q: How did you feel when the doctor told you that you have lupus? Did you know what lupus was?
Being that I had never heard of it before, I giggled. The doctor said it’s not funny—you can die from lupus. He performed a biopsy in the office and sent me to the hospital for immediate blood tests. Needless to say, I was overwhelmed. I was crying all the time and just detached from everything. Am I going to die? That was all I could think of.
My next step was seeing a rheumatologist. After he conducted his own blood tests, he confirmed the diagnosis. I was put on Plaquenil and steroids immediately. I showed improvement, and now I am only on the Plaquenil once a day. I also had spells of ulcers in my nose and mouth, along with a low blood count, which led me to see a hematologist. It was determined that I would progress slowly.
Getting Involved With Raising Lupus Awareness
Q: How did you first become involved in raising awareness for lupus? What made you want to get involved and start a fundraiser?
I can’t really remember how it all started. It began at my local private club, where I was a longtime member of the ladies’ auxiliary. We fundraised for many causes, so I asked them to help with a lupus fundraiser, and now it’s an annual event.
Q: Can you describe your event and what inspired you to create it?
The first event was a simple rock-a-thon, where for 12 hours straight, someone had to be in a designated rocking chair. My boyfriend (now husband) set up a huge canopy and a rocking chair. I had pamphlets, books, diagrams—lots of materials to share with whoever walked by or stopped. Volunteers signed up to rock at half-hour increments. The first year we raised over $2,000.
Q: How has it grown over the years?
Each year, I’ve kept the rock-a-thon while adding a different theme. We’ve had carnivals, painting parties, casino nights, outdoor gatherings, miniature golf and this year will be a game show day.
Q: What does it mean to you to bring your community together for this cause?
Lupus awareness is the focus of each event, with the fundraising aspect being a bonus. It’s important to strive for more funding to help spread awareness. My friends and relatives know that I am always open to questions about the disease. I’ve been lucky with lupus—as much as anyone can say.
Q: Why should others get involved with raising lupus awareness?
Raising awareness brings lupus into the conversation. The more people know about lupus, the more support, research and understanding we can generate. Every effort helps, no matter how big or small.
Q: What advice would you give to others trying to start their own fundraisers?
Start with something you enjoy and keep it simple. Get your friends and family involved, and don’t be afraid to ask for help. People want to support a good cause, and when they see your passion, they’ll want to join in.
Like Holly, you can turn your passion into action by creating your own fundraiser for lupus awareness and research. Whether it’s a rock-a-thon, a game night, or something uniquely yours, every effort helps bring us closer to a world without lupus. Get started today at lupus.org/makeyourmark.
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