Group makes 'invisible' illness visible
Molly's Fund uses technology, support in battle with Lupus
Molly McCabe wakes up every morning with the knowledge that this morning could be her last.
The Southeast Portland resident is one of five million people worldwide who has lupus, a chronic, autoimmune disease that can damage any part of the body, including skin, joints and organs.
It took two years and visits to numerous doctors to even find out that she had lupus.
In 2006, when she was 27, McCabe woke with a fever of 104. It turned out that she had seven different infections, so she was given antibiotics.
Two weeks later, the infections came back again, and again and again.
"For the next two years, that was the story of my life," she says.
Finally, a friend who was a doctor at UCLA Medical Center arranged for McCabe to see 14 different specialists.
The 14th was a rheumatologist, who told her she had lupus, handed her a prescription for Plaquenil, and walked out the door.
"I had no idea what I had, so I hit the Internet and scared the living daylights out of myself -- lupus is a fatal disease," McCabe says.
"It was heartbreaking. I had just reached a stage in my career as an opera singer where I had a contract with the Portland Opera Artist Program, and I couldn't stay well enough. It was heart wrenching to watch all my dreams be destroyed."
Once McCabe was diagnosed, she and her mother, Debbie McCabe, searched the Internet, looking for a cure for lupus. Together they discovered that very little research had been done about the disease. Even more shocking, they found no support groups, no lists of doctors -- and few resources available to help understand the disease.
The McCabes then came up with the idea to start a nonprofit called Molly's Fund Fighting Lupus.
"This was my mom's way to figure out how to help people like me. We decided to focus on Web resources, because one way to reach out to the world is through computers," Molly McCabe says.
The organization has been going strong for four years; Debbie McCabe is president, and Molly is vice president. There are three paid staffers; Molly is an unpaid staff member.
"We focus a lot of our efforts on support groups; one meets monthly in Portland, and one meets weekly online," Molly McCabe says.
Molly's Fund uses Web resources to focus on giving patients information, and a referral network helps lupus sufferers find doctors.
The Portland support group started slowly but has grown from 12 to 15 members, and Molly McCabe hopes to reach out to even more people.
In 2011, state Sen. Diane Rosenbaum, D-Portland, and state Rep. Carolyn Tomei, D-Milwaukie, co-chairwomen of the Oregon Women's Health and Wellness Alliance, joined with Molly's Fund to pass Senate Bill 348, declaring May Lupus Awareness Month in Oregon.
On May 20, Molly's Fund Fighting Lupus held Butterflies in the Park, a walk for lupus awareness. More than 225 people attended, and the organization raised more than $20,000.
Looking ahead to Oct. 4, the organization will sponsor a three-day event called Serving Up Style, where top interior designers create innovative "rooms of distinction" at the Portland Fall Home and Garden Show.
"This is our fourth year with this wonderful event; we have a gala on Saturday night that features a live and silent auction, and people can vote for their favorite room. We will even have an HGTV star judge," McCabe says.
All the money raised goes to support research and treatment for lupus sufferers.
The group is also working on a client assistance program through Catholic Charities, to help people get social services, disability benefits, food stamps and health care advice.
Lupus is often called the "invisible disease," McCabe says, because sometimes it manifests no visible symptoms, although the sufferer might be feeling constant pain.
She also has a simple explanation for the disease. In a normal person, she says, when a cold germ invades the body, the immune system will kill it. But in a lupus sufferer's body, the cold germ invades the body, the immune system kills it, and then the immune system attacks healthy cells and organs.
"This triggers a flare-up of the disease that can be damped down with rest and medication, but sometimes the flares get bigger and bigger," McCabe says, adding that you never know which flare might be your last.
And then there are the emotional side effects.
"When you are first diagnosed, you grieve for the life you had, and what you have now," she says. "You suffer deep depression. There are limited opportunities to get pregnant, and you are fatigued all the time and can't hold down a job."
She considers herself lucky to have found something to focus on with Molly's Fund, but still has her dark days.
Lupus is the Latin word for wolf, and she has heard that the name came about because a characteristic rash among some sufferers resembles the pattern of color on a wolf's face.
Diagnoses and advances
Molly McCabe notes that 90 percent of people with lupus are women, and 80 percent develop the disease between the ages of 15 and 45. Women of color are three times more likely to have lupus.
Lupus is extremely difficult to diagnose, she says, partly because it mimics a lot of other diseases, like Lyme disease and other autoimmune diseases.
Complicated blood tests, like the antinuclear antibody test, can reveal that patients have lupus, as can another blood test that shows a gene mutation. A list of 11 traits is on the Molly Fund's website, and if a person exhibits four of those traits, that is an indication of lupus.
"Sometimes people don't get diagnoses until they are at the end stages, and there is nothing they can do about it," McCabe says.
Luckily, more research and clinical trials are being done about lupus, and in 2011 a brand new medication, Benlysta, came on the market. It's the first new lupus drug in 52 years. Benlysta, from Human Genome Sciences, has changed her life, McCabe says.
"It is administered by IV once a month," she says. "There are side effects for two or three days, and then the rest of the month is normal. I have much more energy, and my brain is clearer."
'The Fairy and the Wolf'
McCabe can now add one more line to her resume -- she is a published author.
Working with Jaime Gault and Nicole Lawry, they wrote the book "The Fairy and the Wolf," a way to help explain lupus to children.
The book is illustrated by Lily Pham, and tells the story about what happens when Bobby finds out his mother has lupus.
"The wolf pushes his mom, but the fairy gives her good advice," McCabe says.
The book is available on her website and through Amazon.
"It doesn't explain lupus," she says, "but it is meant to start a conversation."
Find out more
• Molly's Fund Fighting Lupus: www.mollysfund.org; 10117 S.E. Sunnyside Road, Clackamas; 503-775-3497
• A lupus support group meets at 11 a.m. the second Saturday of every month, at the First United Church of Christ, 1126 S.W. Park Ave. in Portland. The next meeting takes place on June 9.