On World Lupus Day, we want to share this young Hawaiian woman’s story about battling lupus and how her positive outlook has helped in her journey — and maybe can help in yours.
Skylar Soares is an ambitious, enthusiastic and inspiring young woman who wears many hats.
In 2013, at age 12, Skylar became a budding fashion designer who was named the Small Business Hawaii Entrepreneur of the Year. Fast forward to today. Now, she’s a sophomore at Boston University, on her way to pursuing a doctorate in psychiatry. How time flies.
Along the way, Skylar, now 19, has also worn the hat of a chronic disease patient who has been diagnosed with three potentially life-threatening autoimmune disorders: hemophaghoctic lympholistiocytosis (HLH), Job syndrome and, more recently, lupus.
HLH is a rare disease in which certain white blood cells — histiocytes and lymphocytes — attack other blood cells and affect organs. Skylar’s diagnosis of HLH came at age 7 after she fell asleep in class and couldn’t be awakened, sending her to the hospital. A couple of days later, she was going into multi-system organ failure. “My organs started shutting down, one by one, pushing me to the top of the country’s transplant list,” Syklar recalls. “My mom saw the flatline go across the monitor, and they told my parents to start planning my funeral.”
But Skylar pulled through. Soon afterward, she was also diagnosed with Job syndrome, another rare disorder that affects the immune system and can infect the lungs, skin and other body parts. Following that was her diagnosis with lupus, an arthritis-related disease that can cause inflammation and pain in any part of the body. Skylar actually has two types of lupus: In systemic lupus erythematosus (SLE), the immune system that usually fights infections attacks healthy tissue instead, which can cause life-threatening complications; lupus nephritis is an inflammation of the kidneys caused by SLE.
Skylar says her lupus started with severe joint pain. “I was tired a lot. My back hurt a lot, right where my kidneys are. My skin had really bad systemic eczema.” She ended up in the hospital for about a month and was on a kidney transplant list. Kidneys can be particularly vulnerable to damage from lupus.
“Lupus presents itself completely differently in different people,” she explains. “No two cases are alike. For me, I have a lot of arthritic symptoms. My joints are super susceptible to pain. If I dangle my legs too much, my knees will hurt, and I can’t move.”
Skylar’s medication regimen is intense. She takes 23 pills every day to manage her conditions, including a long-term steroid. And every Sunday, she takes a self-infusion. Her medical team consists of eight specialists, including a rheumatologist.
“The organs I have to worry about are my heart, my liver, my kidneys and my stomach,” Skylar says. Her stomach and liver are vulnerable to the many meds she takes, making her prone to acid reflux. She says her organs are performing well, and her symptoms are being well managed right now. “I worry about my arthritis. Often, I’ll wake up and my knees will be locked, so I have to ease my way into getting up. There are days when I can’t use my hands, so I wear my compression gloves. Flexing and crunching hurts. Those are the days I’m really tired.”
Skylar’s lupus prompted her to launch her HiSky hat line as a pre-teen and young entrepreneur. With support from the Make-A-Wish Foundation, her extensive line of hats and other skin-care apparel took off. “I’m actually allergic to the sun, which is kind of ironic living in Hawaii,” she says. She hopes her unique hat line teaches more people about sun safety. Today, however, Skylar is mostly focused on her college studies in psychology and psychiatry.
“With my lupus and other conditions comes not only medical challenges, but also mental challenges.” Skylar points out. “Psychiatry should be integrated into treatments. Your organs have to work with your brain. I’ve had major depression and anxiety issues myself. Everyone needs emotional support. If my mental health sucks, my physical health sucks.”
May 10 is World Lupus Day, when Skylar hopes more people will recognize this often invisible disease. “Lupus really exists. When I went to Disneyland, I couldn’t walk all over the park. I used a wheelchair. I got a lot of dirty looks because I didn’t look sick. What you see is not what you get when it comes to lupus and other autoimmune disorders.”
In addition, Skylar celebrates Asian Pacific American Heritage Month in May — which is also National Arthritis Awareness Month. “I identify heavily with my heritage,” Skylar says. “Getting the treatment you need is harder for people of color. My mom has to fight every year to get my lifesaving treatments because I’m not considered high priority.”
Skylar grew up knowing she wasn’t alone facing her challenges. She’s been active in the Arthritis Foundation’s JA camps (Camp Mana’olana) for kids, Walk to Cure Arthritis and other events because she loves to help out. “Knowing there are people just like you is comforting, and it’s vital to recovery.”
Skylar’s parting words to those facing arthritis and other chronic health issues, especially young people: “The number one thing is that life does get better. You’re not going to feel like this forever. I remember being in a hospital bed doing chemotherapy, thinking ‘I am so done with this.’ Now, I’m a college student, studying what I love. Life is good. It does get better. You can only go up.”
To help patients turn their lives around, the Arthritis Foundation’s Live Yes! INSIGHTS study is guiding scientific research into better treatments and a cure, as well as arthritis advocacy efforts and the development of patient education resources. Take the survey and make your voice heard. You can help shape the future of arthritis today.