Rheumatology Patient Stories
Living with a chronic disease can be confusing and frustrating. There are daily struggles, a variety of treatments, side effects, flare-ups, and impacts on families. Below, read the stories of people living with rheumatic diseases.
In 2006, Valerie was a vibrant freshman at the University of California, Santa Barbara, taking classes, working at the children’s center, joining several clubs, going to plays and concerts, and hanging out with friends. Then, she began feeling tired and had a persistent high fever. When her symptoms were at their worst, she could not walk down her hallway without feeling depleted. Then her urine changed to a dark brown, almost copper color, with white foam. She called her mother, a registered nurse, who told her to come home immediately. She was admitted to the hospital, and a kidney biopsy confirmed her doctors’ suspicions—she had lupus nephritis.
Lupus is a chronic autoimmune disease that is more prevalent in women. Lupus nephritis is a severe and potentially life-threatening manifestation of lupus resulting from kidney inflammation. Swelling around the eyes, legs, ankles, or fingers is often the first noticeable symptom. Severe cases can result in kidney failure. Approximately 60 percent of lupus patients will develop clinically relevant lupus nephritis, which is more likely to present severely in Asian Americans, African-Americans, and Latinos.1
Valerie’s immune system was “attacking everything,” she says. She visited multiple doctors, entered clinical trials, and tried various treatments. After a couple years, her kidneys failed and she had to be on dialysis four days a week, six hours a day for several months.
For Valerie, the feeling of constant fatigue was one of the biggest challenges of her disease. Many of Valerie’s friends didn’t comprehend the intensity of her exhaustion and pain. “Lupus has a reputation of being an unseen illness. You can’t do something, but you aren’t outwardly showing symptoms,” she says. “It is hard to balance being a young person and battling lupus. I was 21 on dialysis – everyone wants you to drink and go out, and I thought – no, I want to live.”
Following dialysis and participation in a clinical trial, Valerie began to recover, and her doctors adjusted her medications. By 2012, she was in remission, had graduated college with a Bachelor’s in Gerontology, and headed north to the San Francisco Bay Area. Now, Valerie works full-time as a health center coordinator at a skilled nursing facility, while also working toward her Masters in Long-Term Care Administration.
Despite going through six years of pain and confusion, she considers herself lucky, since so many lupus patients don’t get an accurate diagnosis for a long time. “To know that early on was incredibly beneficial because my survival depended on it,” says Valerie. “I am so grateful. There is light at the end of the tunnel.”
1 Ramesh Saxena, Tina Mahaian and Chandra Mohan,"Lupus Nephritis: Current Update," Arthritis Research & Therapy, 2011, 13:240. doi:10.1186/ar3378
Giant Cell Arteritis
Sam is an upbeat, multi-tasker. She is a single mother, an avid paper crafter, teacher, and a researcher at the University of Michigan at Dearborn. But two years ago, she began to experience pain in the back of her neck. She was given a prescription for ibuprofen, but the pain did not go away.
Another doctor gave her a shot that was supposed to relieve the pain for two weeks, but the relief lasted only two hours. “I had never been really ill in my life. I thought I was a hypochondriac because then I started having temporomandibular joint disorder,” says Sam. “It was also difficult to pull a t-shirt over my head.” Eventually, Sam had to cancel teaching and back away from paper crafting.
Her regular doctor was on vacation, so she saw a second internist who diagnosed her with polymyalgia. She went home and immediately began researching the condition. She realized that she might actually have giant cell arteritis (GCA). A temporal biopsy confirmed her hunch. As an African-American, she does not fit the typical profile, and she is grateful for the almost-correct diagnosis and for her own research and advocating.
GCA is an inflammation of blood vessels, most often in the scalp and head, particularly around the temples. A persistent headache is a common symptom. (GCA can overlap with polymyalgia rheumatica.) GCA occurs only in older adults. Women, particularly women of Scandinavian descent, are 2-3 times more likely to have it than men. If not treated promptly, it can lead to loss of vision, stroke or death.
Because there is not much awareness about GCA and because Sam is so positive, many of her friends were unaware about her level of pain. “The only person who really understood is a friend who is a retired pediatrician,” she says. “Now I have an elevator speech about GCA and two friends who go with me to my doctor’s office.”
She is now in treatment, but the side effects have been debilitating. She developed an ulcer in her mouth and an issue with her internal sugar regulation that became pre-diabetes. Nonetheless, she knows she is one of the lucky ones. She could have lost her sight permanently. “I remember to appreciate the birds singing in the morning and the smaller things in life,” says Sam. “Now I also have a greater appreciation for pain my brother experienced most of his life. He died at the age of 50 and had rheumatoid arthritis since he was seven years old.”
And as her pain and symptoms subside, she is returning to her passions, preparing to teach once again and making greeting cards and purses for friends.
Beekeeping is a delicate mix of attention and allowing the bees to be bees. It requires a certain fearlessness, dedication, and nimbleness as you slowly move boxes to check on the queen and her hive and extract honey from combs. It is not a hobby most people with rheumatoid arthritis (RA) would take up, but then again, most people aren’t Phyllis. Phyllis, a 74-year-old farmer’s daughter and great grandmother of four whose passions include crochet, painting, beading, gardening, and of course, beekeeping.
RA is an autoimmune disorder that affects your body’s tissues, typically the small joints in hands and feet. Beyond the painful swelling, RA can lead to irreversible damage to cartilage, tendons, and bones, and it can impact other organs, including the skin, eyes, and lungs.
In 2001, Phyllis was working as a record keeper for 16 dairy farmers, testing milk, noting births and medical issues. “It was very interesting,” says Phyllis, who grew up on a 275-acre farm. “It was almost like going home.” She started noticing pain in her hands when she was carrying heavy meters to measure milk samples. Unclear what was happening, her pain progressed until it was unmanageable and she lost all strength in her hands. When her husband had to help carry her meters, she had to stop working. That was when she sought more help. “I knew something was wrong when I had to take time off work,” she says. “I never took time off.”
She first went to her local health clinic; they referred her to a rheumatologist who diagnosed her with RA. Her initial treatment didn’t seem to provide any lasting relief. Her symptoms continued to worsen. She was unable to open car doors or walk up and down stairs. For three painful years, she and her doctor tried various medications to manage her symptoms, but nothing worked for more than a few months before the symptoms and the discomfort would return.
Then Phyllis and her rheumatologist found a therapeutic regimen that worked for her. She was able to go back to work and to her many interests like beekeeping and gardening. “I like working,” she says. “I like the satisfaction of getting something done.” On top of everything else, she is now fostering and bottle-feeding a baby piglet and looking into new bees for the keeping.
Stephen is one of the most optimistic and exuberant people you are likely to meet. It is easy to imagine him leading seminars, sharing his natural and hard-won appreciation for life. It is harder to imagine the road that led him here.
In December 2007, he was at his physical peak, surfing whenever he could and recently promoted to full-time regular firefighter at the Bakersfield Fire Department. To celebrate, he and some friends went to Costa Rica, surfed every day, and drank beer. In the middle of the celebrations, however, his hands and feet started to swell. He couldn’t pop up on his surfboard and couldn’t unclasp his hands with ease.
Back home, his doctor first thought it was the diet and salt water, but the symptoms progressed. His hands and skin started to get tight and shiny, he felt completely out of shape, unable to raise his hand above his head, he had difficultly swallowing food and was losing a significant amount of weight. In May 2008, he finally was correctly diagnosed with scleroderma, or systemic sclerosis. Scleroderma is an autoimmune rheumatic disease characterize by skin hardening (fibrosis) and immune system abnormalities targeting connective tissues, blood vessels, and other major organs.
If you need a further indication of Stephen’s amazing attitude, when he finally got a diagnosis and knew he was “in for a ride,” he looked at his doctor and said, “Well, dude, let’s kick some ass.” That meant four and a half years of immunosuppressive therapy to get his immune system to slow down and stop producing an abundance of collagen. But he feels like the luckiest guy in the world because he didn’t have any of the major side effects and so was able to stay on this treatment until his body responded and his symptoms abated.
As a testament to Stephen’s spirit, when he had to go on catastrophic leave, his fellow firefighters donated their vacation hours to cover eight months of his salary and organized a fundraiser to raise $30,000 to help cover his medical expenses.
Now he is back to work and enjoying the life he loves. But Stephen is not one to stop there. He sits on the board of the Scleroderma Foundation and he started a support group for people with scleroderma in Kern County. “The beauty of this disease is that it has enabled me to see all the positive things in life,” says Stephen. “I am here to have as good a time and love as many people as I can while I am here on Earth.”
Systemic Juvenile Idiopathic Arthritis
Waylon, 11, is an active boy who loves basketball and the St. Louis Cardinals, rides bikes with his older brother, wants to be a graphic designer someday, and has systemic juvenile idiopathic arthritis (SJIA).
Waylon was two when he fell getting out of a car. He was unable to stand, and his parents noticed his knee was swollen. They took him to the hospital, and after weeks of tests and more hospital visits following a fever and a rash, Waylon and his family were told that he had SJIA. SJIA is a rare, debilitating autoimmune disease that causes inflammation of the joints that can spread to organs. For Waylon’s mother, Jessica, the diagnosis was a relief. Still, she wondered, “How am I going to help my little boy?”
With treatment, Waylon’s systems improved. However, when Waylon was three, his arthritis flared up. He hurt all day for months before a medical treatment could be found. When he woke, his parents had a heating pad ready, and at preschool, his teachers would give him paper towels with warm water. His parents explored essential oils and chiropractors. “I was willing to try anything because I had seen him in so much pain,” says Jessica.
Remarkably, Waylon was not a gloomy child. Although he remembers hurting a lot during this period, when he was about four, he was unable to think of anything bad that had happened to him when asked his Sunday school teacher asked the class to say good and bad things in their lives.
Finally, his doctors found a treatment that worked. Although she works in the marketing department of a local hospital, Jessica had never given a shot to someone. Luckily, she has been able to rely on the support of her family and co-workers. Her boss is a registered nurse who taught her how to give a shot, and he, his wife, and Jessica’s sister-in-law—all registered nurses—offered to administer shots when she wasn’t able to.
Now his doctor is tapering off his medication, and Waylon is in “medical remission” with no signs of the disease.