When you ask Robin Spencer Laurie how many surgeries she has had, she hesitates a moment, does a quick bit of figuring and then says assuredly, “10.”
That’s two hips, each done twice, two knees, a shoulder, both ankles, and just weeks ago another knee surgery.
The 49-year-old Hampden woman has spent her entire life learning to live with rheumatoid arthritis, one of the most common and serious forms of the disease arthritis.
Arthritis refers to more than 100 different diseases that cause chronic pain, swelling and limited movement in joints and connective tissues throughout the body. The three most common forms are osteoarthritis, in which the cartilage at the ends of bones degenerates, causing bones to rub against each other; rheumatoid arthritis, considered an autoimmune disease involving inflammation of the joint linings and sometimes organs, and in which permanent damage and deformity can occur to the joints; and fibromyalgia, which commonly involves the muscles and the areas where they connect to joints.
Spencer Laurie grew up in Deer Isle, the oldest of three sisters. She was just 2 years old when her knee swelled, turned red and became painful.
“I could not walk on my right leg,” Spencer Laurie said recently. “My parents took me to the hospital and after four days and many tests, I was diagnosed with RA.”
Rheumatoid arthritis has assailed her body ever since. She walks stiffly, is unable to turn her neck and often can hear the bones grinding against one another. She can’t bend her ankles. She decided long ago to forgo having children for fear that she would be unable physically to care for a baby.
She battles the disabling disease every day, yet runs a successful insurance company, socializes often with friends and family, goes to hockey games, recently was married, and for the past year, has been working as an ambassador for the Arthritis Foundation.
In that role, she has traveled to Washington, D.C., to meet with all four members of Maine’s congressional delegation and encourage them to support the Arthritis Prevention, Control and Cure Act, which was introduced to the House of Representatives on Feb. 26 amidst strong bipartisan support. The U.S. Senate version of the bill is expected to be introduced soon by Sen. Barbara Boxer, D-Calif., and Sen. Kit Bond, R-Mo.
The bill would help ensure that more people are diagnosed earlier in their disease process, thereby decreasing their pain and the chances of permanent disability. It would establish an interagency coordinating committee to oversee the expenditure of federal funds used for research. It further addresses the country’s shortage of rheumatologists — medical doctors who diagnose and treat arthritis — particularly pediatric rheumatologists, by encouraging more doctors to pursue that field.
It would appropriate $23 million for the arthritis program at the U.S. Centers for Disease Control and Prevention, which amounts to about 50 cents per person with the disease.
Forty-six million Americans have doctor-diagnosed arthritis, according to the Arthritis Foundation.
Though often considered an “old person’s disease,” there are 300,000 children in this country living with some form of juvenile arthritis.
It is the leading cause of disability in the United States, according to the American College of Rheumatology. Yet as the numbers of those with arthritis grows, the dollars spent on research and prevention diminishes, the foundation Web site states.
According to statistics from the Center for Disease Control, 335,000 adults in Maine have some form of arthritis, and 133,000 of them are severely limited by their disease. Thirty-five percent of women in Maine have diagnosed arthritis and 29 percent of men, according to those same statistics.
Dr. Dora Mills, director of the Maine Center for Disease Control, said arthritis does not get the attention it deserves.
“We know it’s extremely prevalent, and we know it’s a major contributor to disability,” Mills said. “It’s a very small number of people who die with arthritis listed as a cause of death but we know, for example, that arthritis can pose a huge complication for people with heart disease, cancer or asthma. … It’s certainly a disease that needs more attention.”
Children in pain
“One of my biggest concerns is for the children with this disease,” said Spencer Laurie one morning over a cup of tea. “There is a serious lack of pediatric rheumatologists, which means on top of everything else, these families must travel great distances for treatment.”
She knows too well just what children with arthritis go through.
“I had to use braces at times when walking so that we could try to keep my feet straight. I needed to wear casts on both legs during the days at the hospital and at night when I was home. I had to do various exercises to try to strengthen my legs. We used sandbags tied together by a rope as weights. At one point, I had lifts put in my shoes and then special shoes made specifically for my feet and they were ugly and big. They made me more self-conscious than I already was,” she said.
She often had a difficult time taking that first big step onto the school bus and needed to ask for help.
She was teased. She couldn’t play on the playground. She couldn’t play sports.
“Kids can be rotten when you look different. Some kids certainly picked on me. But I joined the band and the chorus. It’s funny, but a little sad now looking back at pictures and things because I’m always way in the back sort of trying not to be seen,” she said.
Despite teasing in school, Spencer Laurie always had the comfort, support and physical help of her tight-knit family.
But then it was time for college.
“I went to Husson and it was the first time I’d been away from parents — away from their help and daily support,” she recalled recently.
An occupational therapist helped her learn how to dress herself, a task that traditionally had been done by her parents.
“I learned how to use ‘a reacher,’’’ she chuckled, referring to a device that acts almost like an extendable hand, “otherwise I couldn’t have gotten myself dressed. And perhaps the most difficult thing of all was that I had to learn how to ask complete strangers for help. That’s not an easy thing to do.”
Spencer Laurie had to learn how to dress herself, groom herself, use her “reacher” to put on her socks and use another stick to pick up items she dropped.
“My dad built blocks to go under the bed legs because the beds in the dorm were too low for me to get onto. My dad got good at improvising items to help me out. One of my first sticks was made out of a croquet mallet handle with a clothes hanger bent in the shape of an ‘S’ and screwed into the handle,” she said.
Her first college roommate asked to be transferred because she felt too uncomfortable with Spencer Laurie’s disability.
“That made me very depressed. I was already so insecure and scared,” she said. “But in the end everyone else at Husson was so great. They got used to having to pick up my books for me when I dropped them. Going there was a great experience and helped me a long way toward self-sufficiency. After graduating from there, I’ve always held a job, well, at least between surgeries.”
Patience and love
Arthritis has been among the most prevalent issues of Spencer Laurie’s life. As a young adult, she’d find herself having to explain to dates what her limitations were. She had to find friends who were willing to be patient when it took her so much longer to walk from the parking lot to a restaurant.
Then she found Tracy Laurie.
“My family was pretty protective when we first started dating. They wanted him to know right away what he was dealing with because if he couldn’t handle it, then it wouldn’t work,” she said.
Laurie stepped up.
Today, he helps her put on her socks in the morning. He ties her shoes. He vacuums and does the laundry. “I didn’t go into this with my eyes closed,” he said. “I certainly knew there would be challenges, but it just so happens that I fell in love with Robin. Robin has arthritis, but that’s who I fell in love with. Does she need extra help sometimes? Sure, but that doesn’t faze me one single bit.”
“My family was right on top of it,” she said. “They wanted him to know exactly what he was getting into because they needed to know he was OK with it. I’m very lucky.”
The latest surgery is the first they’ve been through together.
“Up until now, I’ve always depended on my parents to get me through these surgeries. This is the first time I’m not going to be recuperating at their house. I’m recuperating at our house with Tracy. That’s been a big step for all of us, but it’s a nice one. Tracy has given me that bit more of independence. I can rely on him. I can ask him for help,” she said.
There is still no answer as to what causes arthritis, though genetics may have something to do with it. There is still no cure. New biological drugs have shown promise, but many have had such bad side effects they have been pulled off the market.
Certain forms of the disease, such as rheumatoid arthritis, do not just cause pain, but actually eat away at the bone and tissue, causing permanent damage.
“That’s where this bill comes in to play because we have made great progress and I really believe that with the proper research we can diminish the damage being caused to the bodies of these children,” Spencer Laurie said.
Spencer Laurie is a petite, pretty redhead. She smiles easily and doesn’t bring up the arthritis issue unless you ask. This was her most recent e-mail to me.
“Renee — thank you for reviewing this and getting the word out. One of my goals was to get in the local papers so that people could learn more about this very debilitating disease. It affects young people and old people and people of middle age. Those who have it must learn to live with pain every single day, yet learn not to let that pain control their lives,” she said.
The arthritis walk is at 9 a.m. Sunday, May 17, at William S. Cohen School, 304 Garland St., Bangor. To register, visit www.arthritis.org or call the Northern New England Chapter of the National Arthritis Foundation at 800-639-2113. Support for the bill can be made at arthrtisfoundation.com or by calling members of your congressional delegation.