Melaca Cannella felt exhausted from her everyday activities and was sleeping more than half the day. Her skin was extremely dry and her voice hoarse. Her vision became blurry, and she forgot simple things like the PIN for her bank card.
After visiting an ophthalmologist, a pulmonologist, a gastroenterologist, a cardiologist and an ear, nose and throat specialist and receiving a clean bill of health, she was referred to a rheumatologist who was finally able to provide some answers.
In October 2010 she was diagnosed with Sjōgren’s syndrome, a chronic autoimmune disease that causes white blood cells to attack moisture-producing cells. About 4 million Americans, including tennis great Serena Williams, are living with the disease, and 9 out of the 10 patients are women.
Dr. Henrik Sjōgren identified the disease in 1933. Classic symptoms include dry eyes and mouth, but the illness can also cause dysfunction of the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas and central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma, according to the Sjōgren’s Syndrome Foundation.
It is often misdiagnosed because symptoms mimic other conditions. Sjōgren’s syndrome also affects individuals differently. For Cannella, her elevated levels of liver enzyme were a cause for concern.
"I was lucky. It took about six months before I was diagnosed. It normally takes five years or longer to get a diagnosis of Sjōgren’s syndrome," she said. "Nobody expects to get something like this. And, worse, nobody knows about this disease. There were no support groups."
So, Cannella organized a support group for others with her disease. The group meets quarterly.
"By helping others, it’s really helped me work through my own issues," she said.
Dr. Scott Kawamoto, a rheumatologist at the Queen’s Medical Center, is involved with the group, and Cannella hopes to expand to include those with other autoimmune illnesses such as lupus.
Once diagnosed, she was able to manage her disease and hasn’t missed any shifts as a full-time nurse.
She was given steroids to reduce inflammation, but didn’t want to continue medications on a long-term basis. So she worked to improve her general health by working out four to five times a week and changing her diet. She lost 30 pounds and would like to drop about 10 more.
"I make healthy choices. I eat fruits and vegetables. I don’t eat plate lunches and fast foods like in the past," she said.
The changes she made were done slowly and were things she could incorporate into her normal lifestyle for the long term.
Her efforts have also benefited her children, ages 23, 20 and 10, who have adopted healthier lifestyles as a result.
Cannella has been off her medications for one year, and her liver is fine.
"I’m totally healthy. If you work hard toward what you want, you can meet your goals," she said.
She is waiting for her next checkup in May, when she hopes to receive the good news that she is in remission, something that doesn’t occur often with Sjōgren’s syndrome, she said.
"I can’t let my disease bring me down. It’s been a great journey. I’ve learned so much. I’ve been able to help so many people," she said. "I need to live my life and be normal. Attitude is 120 percent of it."
Cannella stressed that people need to be an advocate for their own health care and take charge of their illnesses and engage in open communication with their physicians.
The next Sjōgren’s syndrome support group meeting is 6 to 7:30 p.m. March 6 in the Ewa Conference Room at Pali Momi Medical Center in Aiea. Guest speakers are registered dietitians Lauren Yasui and Rebecca Izawa. Email alwaysbhealthynhappy@gmail.com for more information.
———
“Be Well” features inspiring stories of people dealing with health challenges. Reach Nancy Arcayna at narcayna@staradvertiser.com or call 529-4808.
