As part of our vetting process for Arthritis by the Numbers – a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.
Meet Liz Morasso, a licensed clinical social worker at UCLA’s department of radiation oncology who has volunteered for the Arthritis Foundation since 2002. That’s when, at age 16, she was diagnosed with systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA). Over the years, she has immersed herself in leadership roles with the Foundation and speaks nationwide to inspire patients living with chronic illness.
Following, in her own words, is Liz’s story about living with these conditions and how the statistics she reviewed in Arthritis by the Numbers relate to her personally. Continue reading Liz Morasso: Support Networks Helped Her Adjust to a New Life
Mark Rucker: “Adopt a healthier lifestyle”
When Mark Rucker was diagnosed in 2015 with rheumatoid arthritis (RA) at 44, he had mixed emotions. He was glad to know what had been causing the often unbearable pain in his hands, feet, jaw and toes for the past year. But, he recalls, “I always thought RA was a disease that only affected elderly women, not someone who was in the midst of training for their second Ironman competition.”
A real estate attorney in Lexington, Kentucky, Mark in the past had been a self-described “385-pound couch potato.” Being told in 2011 that he was too big to ride on the rollercoaster with his kids spurred him to change his lifestyle. He traded in sugary sodas for water, cut processed sugar and added fruits and vegetables to his diet, and began to walk a mile each day during his lunch hour. He lost 135 pounds, and those lifestyle changes led him in 2013 to complete his first Ironman – a 2.4-mile swim, 112-mile bike ride and a 26.2-mile marathon.
Continue reading Life Doesn’t Stop with RA: How Three People Keep Doing What They Love
Charcandrick West, professional football player with Louisiana roots, gets real about what keeps him going, how no hurdle is too high and why he likes to win on and off the field.
Q1: When did you realize you wanted to play football professionally?
I don’t remember the first moment I grasped a football, but the second I did, probably around age 6, I was hooked. I still remember being a kid, looking up from the field and seeing my mom and dad cheer me on. It was a thrill to know I was making people in the stands happy by giving the game my all.
I knew that I had the “it” factor – and my parents believed in me, too, which made all the difference in the world. My goal was to leave my legacy in my hometown of Cullen, Louisiana, and graduate to the “bigs.”
Continue reading Every Catch Deserves a Touchdown Dance
Identical twins Annamarie and Ginamarie Russo share many qualities: They look and sound alike, they love acting and traveling – and both have rheumatoid arthritis (RA).
For almost two decades, RA was one thing the twins, 31, did not share. Ginamarie was diagnosed with juvenile RA (now called juvenile idiopathic arthritis) when she was 12; Annamarie was diagnosed 18 years later, at age 30.
Continue reading Double Take: Twins with RA Fight It Together
In recognition of May as Arthritis Awareness Month, we asked bloggers what they’ve learned from having arthritis, and what they want others to know.
Continue reading Voices: What Has Having Arthritis Taught You?
It’s early morning in Los Angeles, and actress Kathryn Leigh Scott, despite a long flight from New York the day before, has finished her morning walk before heading to wardrobe for her new film, The Eleventh Green. At 74, she exercises every day, which has helped her stay fit – and recover quickly after two hip replacements.
While Kathryn is often remembered for her roles in the television soap opera Dark Shadows, a cult hit that ran from 1966 to 1971, her acting career spans over 50 years, with a wide range of roles in television and movies. In addition, she has authored six books, both fiction and nonfiction.
Continue reading Kathryn Leigh Scott: Out of the Shadows
Anna Neu is 8 years old and holds a title she’d rather not have – the youngest person ever diagnosed with ankylosing spondylitis (AS). She can’t remember a time when she wasn’t plagued by pain in her spine and hips, the telltale sign of her disease. Diagnosed as a toddler, Anna has good days and bad, but often, she’s sidelined by a form of arthritis most people don’t even realize affects children.
“Anna started complaining of bugs biting her back and waking up screaming in the middle of the night when she was just 2 years old,” says her mom, Emily. “She would stop and sit when the family was out for a walk around the block and say, ‘I have no more runs left’ or ‘my engine ran out.’”
Despite the pain, she’s a brave girl, working hard to help doctors learn more about her disease and how to best treat it. A regular study participant at the National Institutes of Health, Anna is hoping she will help researchers find better treatments, and one day a cure, for AS.
Continue reading Anna Neu: Fighting for Childhood
Charcandrick West has juvenile arthritis. Now he’s dodging tackles in the NFL.
It’s a scene fans of the Kansas City Chiefs football team know well: Charcandrick West crashes into a tackler, spins and breaks free, then shifts into high gear as he races downfield. Yet Charcandrick, now in his fourth season as a running back for the Chiefs, never forgets that he has faced a more challenging opponent: systemic juvenile idiopathic arthritis (sJIA). It appeared at age 14, and symptoms became so severe that one doctor predicted the teen might never walk again, much less play football.
Continue reading Unstoppable: Charcandrick West’s Story
People climb mountains for many reasons. For some, it’s a test of physical strength and endurance. For others, it’s for the rush and exhilaration. For Alex Jakobson, it was to prove to himself that he can overcome the pain and limitations of arthritis.
Alex was living a great life when arthritis reared its ugly head. He was 35 years old, married to his sweetheart and living in France where he enjoyed a very social and active lifestyle.
Continue reading Climbing Mountains to Conquer Arthritis
When Mariah Aquino-Truss was just five years old, she was in so much pain each day she told her mom, Tory, that she “didn’t want to be here anymore.” Imagine hearing such an admission from your young daughter who was newly diagnosed with a form of juvenile arthritis (JA) known as polyarticular spondyloarthropathy.
Polyarticular spondyloarthropathy is a juvenile form of ankylosing spondylitis, a chronic, long term disease that affects the joints, ligaments, tendons and entheses. Shocked, saddened and ferociously determined to help Mariah and her family, Tory set out to find help – a road that led her to the Arthritis Foundation.
Continue reading A Dream Come True – Meet Our 2017 National Youth Honoree Mariah Aquino-Truss