Among patient partners who reviewed Arthritis by the Numbers – a collection of verified arthritis facts and figures – was the Soler family of Georgia. Robin Soler has been active with the Arthritis Foundation ever since her younger daughter, Isabela, was diagnosed with juvenile idiopathic arthritis (JIA). At the time she was one of the youngest children in the state to be diagnosed with JIA at just 12 months old.
Over the past 15 years, mother and daughter have seen about 50 different doctors and scores of other medical experts. Isabela has taken at least 20 different types of prescription drugs – consuming more than 15,000 pills in her lifetime, not including antibiotics and other normal childhood drugs. She has missed countless parties and playdates, and one recent semester had to skip 7th period 21 times for doctor’s appointments.
Isabela’s mother, Robin, is a developmental psychologist and senior scientist at the Centers for Disease Control and Prevention in Atlanta. Robin has had her own personal experience with arthritis, diagnosed with fibromyalgia when she was 26, though her chronic pain goes back to her mid-teens.
After reviewing arthritis statistics we’ve collected, Robin’s main takeaway: “I am happy to know there is information out there, but I’m concerned about the pictures the numbers paint for parents. We and our children need to be hopeful.”
Continue reading JA Mom: “I Know Just Enough to Know I Don’t Know Enough.”
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
Each year as the leaves begin to fall and the weather gets a few degrees cooler, Peyton Holstein of Lake Oswego, Oregon, along with her older brother, Tobias and four of their cousins, begin researching both local and national charity organizations. While it is easy to assume this is for a school assignment, it’s not. Each cousin is readying their pitch for a unique family Thanksgiving tradition.
Approximately eight years ago, Peyton and Tobias’ great uncle Ron began donating to different charities in the six cousins’ names for Christmas. When the kids were younger, he chose a charity and presented each child with the donation made in their name along with an explanation of how their charitable gift will help the organization. One year it was a donation of goats to a village in Africa that would help provide the village with milk and fertilizer for crops and gardens. Another year after the earthquake in Haiti, it was a gift of water and rice to fulfill the basic needs of a devastated community.
As the kids grew older, Uncle Ron asked each of them to find their own cause and research the organization – from an organization’s mission to charity rating, how much per dollar is invested to how they intend to use the donation, and make their pitch at the family Thanksgiving get together. The six cousins, ages 10-24 years old, listen to one another, embark on a discussion, make ballots and vote between themselves. The Arthritis Foundation was the overwhelming choice for this year’s donation!
Continue reading A Generation of Giving
For 17-year-old Allison Alberts of Sturgeon Bay, Wisconsin, waking up with pain is an everyday occurrence for her. Some days the pain is manageable and can be helped along by a hot shower or a run to loosen up her body. Other days, Allison might struggle to get out of bed and looks to her father, Jamie, to help her walk or give her joints a comforting massage.
“There are many days I wish I could be normal, let alone feel normal for a day – a day without any pain, “says Allison. “But complaining does nothing. Complaining won’t take away the pain and complaining won’t allow my fingers to look normal. The way I go about my day is to let my arthritis and my body know that they will not stop me.”
Continue reading Champion of Yes: A Three Sport Athlete, Allison Alberts Charges Forward Through Arthritis Pain
American chefs Ruth Graves Wakefield and Sue Bridges invented the chocolate chip cookie in 1938 and served them as a sweet snack and dessert at the Toll House Inn in Whitman Massachusetts. Little did they know the impact their invention would have on a little girl from Greensboro, North Carolina some 67 years later.
Continue reading The Secret Power of Chocolate Chip Cookies
Actor Clark Middleton has spent a lifetime defying limits and arthritis.
Art imitates life imitates art. Actor Clark Middleton, of NBC’s The Blacklist and Hulu’s The Path, is keenly aware of the parallels between his on-camera and off-camera lives.
Continue reading Clark Middleton: Role of His Life
152. That’s the number of days Kristen McAllister, also known as Kmac, spent in the hospital in 2015. That’s 152 days out of school, away from friends and way out of her comfort zone. But, 152 days represents a mere fraction of the battle Kristen, now 21 years old, has been fighting since she was child.
At just 10 years old, Kristen faced her first surgery to remove rheumatoid nodules from her knee and hand. By the time she turned 11, Kristen had several painful joints, was often fatigued and dealt with unexplained fevers. A three-month course of antibiotics seemed to resolve her symptoms — temporarily.
“Kristen was doing so well for awhile that she made the middle school dance team as a rising sixth grader,” recalls Michele McAllister, Kristen’s mother. “We assumed her middle and high school years would always include dance team, competitive cheerleading, church activities and school clubs. But we were wrong.”
Another knee surgery relieved much of Kristen’s pain, but the fevers, joint aches and extreme fatigue returned. Like it is for many children, the road to diagnosis was a long and winding one.
Continue reading More than Just Aches and Pains – Kmac Fights her Biggest Battle with Arthritis Yet
Call it mother’s intuition. When Nicole Doyle woke up one morning with an unexpectedly swollen, hot and painful finger, her mother knew something was wrong. Even though Nicole’s pediatrician initially dismissed the thumb mystery as an injury caused by play, Nicole’s mom kept pressing for answers.
“We went to doctor after doctor, eventually ending up at an adult rheumatologist due to the fact that only about 250 pediatric rheumatologists exist in the entire United States,” recalls Nicole, now 18 years old. “As a three year old, I did not want to be there and have them examining me. I just wanted to go back home and play with my brother.”
Nicole’s visit with the adult rheumatologist is a day she will never forget.
Continue reading From Methotrexate to Miss Teen Minnesota: Nicole Finds Strength In Doing What She Loves
Like many people, Jen Horonjeff is traveling this summer. Don’t look for her on any planes or trains, though. Jen is making the trip from New York City to Orlando — all on her bike.
Diagnosed with juvenile idiopathic arthritis (JIA) when she was just 11 months old, Jen is finalizing plans to ride on a tandem bike with her partner from her home in New York City to the Arthritis Foundation’s Juvenile Arthritis Conference in Orlando. The trip, more than 1,400 miles, will take approximately 17 days.
Continue reading 1,400 miles for 300,000 Children : Jen Bikes Down the Coast to Juvenile Arthritis Conference
“I’ll never forget one night when she was crying in pain and rocking back and forth in her little rocking chair and said, ‘God, why won’t you help me? Mama, please help me!’”
Amanda Vizier, of Jackson, Miss., endured an eight-month nightmare trying to find a correct diagnosis and treatment for her daughter, Chloe, now 8 years old.
On Chloe’s sixth birthday, in 2010, she developed a rash. The doctor said it was probably some virus, and not to worry about it.
Within a couple of days, she started running a fever and we went back to the doctor. Chloe was diagnosed with Rocky Mountain spotted fever and went on antibiotics, but they didn’t help. For more than three weeks she had a fever of 104. She developed abdominal pain, she started limping, her rash was itching and she was screaming in pain. She ended up in the hospital for a few days. Over months of testing, doctors ruled out cancer, lupus and even juvenile arthritis. After all, her joints weren’t swollen.
She was diagnosed with strep throat, then with chronic hives. An allergist asked if she was just anxious.
Continue reading A Long Wait for Answers with JIA