Social Encore: Knowing lupus
BY JERMEL-LYNN QUILLOPO / Special to the Star-Advertiser
For approximately 1.5 million Americans, the month of May is an opportunity to spread awareness about lupus. Often called a “silent” disease because of few visible physical symptoms, many in Hawaii are also unaware of the autoimmune disease because of a lack of available resources. Two women with Hawaii ties and living with lupus want others to know about the disease.
Lupus can be found in both women and men, but 90 percent of people diagnosed with the disease are women between the ages of 15 and 44 years old. Some symptoms are considered common and tend to come and go, so many don’t make the connection that they may have lupus. Symptoms can include anemia, skin rashes, mouth ulcers on the roof of the mouth as well as swollen and painful joints.
Moanalua High School graduate Jayanne Obusan moved to California for college and in 2010 was diagnosed with mixed connective tissue disease, an autoimmune disorder where the immune system starts to attack the body’s own tissues. In 2012, she became sick with pneumonia, which triggered antibodies from the mixed connective tissue disease. Further tests affirmed her disease was affecting her kidneys, also known as lupus nephritis. Now living in Anaheim, Calif., she admitted she couldn’t believe what was happening to her body and said it took a while before she could accept her diagnosis.
“When I first heard from my doctors that I had lupus I was in denial,” she said. “I didn’t want to believe what they were saying or believe that I could have gotten this sick.”
Obusan, 26, said her daily routine can be daunting at times; one of the hardest challenges is keeping herself warm. At room temperature, her fingers and toes turn blue/purple from being too cold. Obusan is also a singer, and lupus has significantly impacted a part of her she holds dear to her heart.
“Lupus has affected my vocal chords tremendously due to inflammation and swelling,” she said. “There is now a slight rasp in my talking voice and I’m unable to reach high notes that I used to sing flawlessly.”
Los Angeles native Nicki Goldwater Araujo moved to Honolulu a few years ago. Near the end of 2000, she noticed a pimple on her face and grew concerned when the skin surrounding it grew noticeably red and created a butterfly rash (redness around the nose and cheeks). Biopsies confirmed she had systemic lupus erythematosus (SLE), a type of lupus that affects the skin, joints, brain and other organs.
Many living with lupus look normal on the exterior but battle various internal problems. Araujo suffers from three: lupus nephritis, a symptom that effects the kidneys and causes swelling in her legs, ankles and feet; brittle bone syndrome, where the slightest amount of pressure could cause bone fractures; and pericarditis, a heart condition caused by an inflamed heart membrane that makes it hard to breathe. When she was diagnosed, Araujo felt as if she would miss out on enjoying life to her full potential.
“At first, I was anxious because I felt like I haven’t gone or done anything in life yet,” she said.
In 2013 she suffered a bimalleolar fracture playing in a dodgeball game in Los Angeles. No one inflicted the injury; she just had the wrong amount of pressure from standing. Recently fluid was found around her heart, which now forces her to sleep at a 80- to 90-degree angle at night in order to sleep. Laying down causes sharp pain and makes it hard for her to breathe.
“My appearance fluctuates often and I hide until I get back to normal,” she said. “After a year into treatments, I came to terms with my life and how to make the best of it.”
Both women admitted that even though living with a disease that has no cure can be hard to cope with, their support systems full of family and friends are what motivates them to live life to the fullest.
“My husband Bobby is my main supporter,” said Araujo. “He has always been so encouraging and was heavily involved with lupus fundraisers and walks in California.”
Statistics show only a small margin of people diagnosed with SLE can maintain a 40-hour work week. For Araujo, living independently and maintaining a career has been a struggle. She said about 85 percent of her paycheck goes to medical expenses and co-pays for her lupus treatments. Both ladies take daily medication to help them manage their diseases and go through routine intravenous infusion therapy.
Both Obusan and Araujo believe having lupus walks and an organization to help spread awareness about the disease is crucial to educating the public. However, Hawaii’s only lupus foundation closed it’s doors earlier this year, leaving it up to people living with lupus to spread the word.
“If there were an organization in Hawaii for lupus, I’d appreciate if the the organization would advocate, provide support and spread awareness,” said Obusan. “Lupus is an invisible chronic illness and we appear healthy outwardly, but we are fighting the disease internally. … This disease affects us physically and emotionally.”
“It is important for there to be a Hawaii support group for lupus patients,” said Araujo. “Lupus patients need a lot of support since some dont have family left due to the health and financial strains families go through. … If more people were educated and more aware, research and development to find a cure would have a lot more chances of being discovered.”
For more information about lupus, visit www.lupus.org.
Jermel-Lynn Quillopo is a multi-faceted, energetic individual with experience in both print and broadcast journalism. “Social Encore” aims to tell diverse stories about Hawaii’s food, events and people; share your tips with Jermel via email or follow her on Twitter.