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.”
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
“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