Cheryl Jong is president of Lupus Hawaii. Diagnosed at age 20, she believes she has had the disease since birth. Cheryl spends most of her time in a wheelchair, yet she manages to run the organization, lobby for Lupus awareness and education, and take care of 4 children, all of whom are symptomatic and are Shriner's kids.
Along with Dr. Morgan Barrett, Deputy Director at the Department of Health, Cheryl Jong and Dr. McKoy presented some sobering facts about the disease:
- Approximately 1 in every 2000 Americans has Lupus; many are misdiagnosed or undiagnosed
- 90% are women
- 80% are between the ages of 14 and 45
- Estimated that 10,000 people in Hawai are affected by Lupus; that is considered a low estimate
- Lupus predominantly affects people of color; Native Hawaiians, Pacific Islanders, African Americans, Asians, Hispanics and Native Americans
Dr. McKoy calls Lupus "The Great Masquerader". It's difficult to diagnose because the symptoms could indicate a number of illnesses. If you read the symptoms below, you can see why Lupus may be diffcult to pin down. That's why many patients go years before being properly diagnosed, a frustrating situation leading to depression, loss of employment and loss of income.
There is a direct correlation between Lupus and women's hormones, which is why few men and women past menopause are considered at risk.
Access to treatment is also a problem. There are few rheumatologists on Oahu, and none on the neighbor islands. Dr. McKoy said this morning that Kaiser Permanente does pay for patients on the neighbor islands to fly to Oahu for treatment. He emphasized several times the difficulty for neighbor islanders to receive the proper treatment.
Symptoms include: achy joints, swollen and painful joints, unexplained fever, prolonged or extreme fatigue, skin rashes, unusual hair loss, mouth or nose ulcers, butterfly shaped rash across the cheeks and bridge of the nose, chest pain or shortness of breath, sensitivity to sunlight, swollen ankles, fingers that turn white and/or blue in the cold, seizures.
For more information, visit Lupus Hawaii's website at LupusHawaii.org.