When Melaca Cannella was first diagnosed, she asked her doctor if there was any local support group or agency where she could find help and information.

“He told me, ‘No, but you’re a nurse. You should start one.’”

She did, and she says that has made all the difference in her health.

Cannella’s symptoms started in early 2010. Her eyes felt dry and gritty, and she started having trouble seeing the TV. She felt tired, but one of her daughters was graduating from high school and leaving for college in California, and there was so much to do. She figured she was just working too hard.

By the end of summer, Cannella was exhausted. She was working full time as an admission nurse at Pali Momi, studying for her master’s degree and taking care of her other two daughters. She dragged herself to work every day, but her condition progressed to the point where she was dizzy, nauseous and unable to function. She became so incapacitated that she lay on her couch for weeks at a time.

Getting a diagnosis took 3-1/2 months, a relatively short time for all the tests needed to detect a confounding disease. At one appointment she was sent for lab work that called for 13 vials of blood. In February 2011 Cannella finally got confirmation: She had Sjogren’s syndrome. She had never heard of it. She was determined to become an expert.

Sjogren’s (SHOW-grins) is one of the most prevalent autoimmune diseases among women. There are more than 4 million Americans with the systemic disease, though little is known about it in the medical community. Symptoms can include dry eyes and mouth, joint pain and debilitating fatigue. It sometimes occurs in the presence of other autoimmune diseases such as rheumatoid arthritis, lupus or scleroderma.

“I searched for incident rates in Hawaii, and I discovered there were no numbers for this autoimmune disease,” Cannella said. She teamed up with rheumatologist Dr. Kristine Uramoto to start the Sjogren’s and Lupus Data Collection project, which so far has collected data from 80 participants in Hawaii. Cannella also started the Sjogren’s and Lupus Foundation of Hawaii to provide education and support for patients.

“Family and friends don’t always accept our diagnosis and have a hard time understanding how we feel,” she said. “It’s awesome to be able to have someone you can relate to when talking through any issues and roadblocks that will cause frustration for us.”

Her foundation is offering a daylong conference May 5 for patients, families and the medical community to learn more about this debilitating, incurable but manageable disease.

Canella, 54, works at AlohaCare as a quality review nurse. She has learned to manage her health, says she feels great and hasn’t been on medication since 2013. She says she’s actually grateful to have been diagnosed with Sjogren’s. It has allowed her to work in her highest calling as a patient educator and advocate.

Reach Lee Cataluna at 529-4315 or lcataluna@staradvertiser.com.