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.
Arthritis is a Family Affair
One of six siblings, Anna is never short on playmates. And though she can’t always participate, she watches from the sidelines as her friends and siblings play in the yard. It’s been a hard road, one littered with financial burden and tough decisions, but Anna and her family remain strong and committed to making a difference for Anna and the thousands of other kids living with various forms of juvenile arthritis (JA).
“As her family, we had some tough choices to make when Anna’s illness started causing us to call into work too often,” says Emily. “Her father had to quit his job for us to manage all her appointments. We underestimated the impact being a one income family would have, especially with the increase in travel for medical needs.”
The Fight Continues
While most AS patients see some relief from the currently available treatments, Anna has not been so lucky. Affecting nearly a half million people, AS is a systemic disease that can attack other joints and organs if not properly managed. For Anna, an effective treatment has been nearly impossible to find, though she and her doctors have hope they can control her disease progression with the right medications.
Anna’s lack of response to medications she’s tried leave her vulnerable to pain and illness. Allergic reactions to several prescription drugs make it difficult to find the right protocol, which has led to worsening inflammation in Anna’s hips. Despite her difficulties, her insurance provider has denied multiple medications doctors believe could have positive benefits for Anna.
While insurers deny medications and doctors try to find alternate treatments, Anna continues to live in pain. All the while, she advocates for the Arthritis Foundation, fundraises at our events and makes sure everyone she meets knows that kids get arthritis, too. Her team – Anna’s Angels – walk and fundraise on her behalf, knowing their work helps fund critical research that could one day change the lives of kids like Anna.
“Her laugh is infectious. Her smile melts hearts. She is quick to give a hug,” says Emily. “Her disease is invisible to most, and we are hoping research can find a medication to make her disease and pain invisible to Anna, too!”
Joining Anna’s Angels
She may be young, but Anna is a fighter. Throughout her community, people are rallying together to join Anna’s Angels and offer support to her family and the Arthritis Foundation.
Even if only ONE kid struggled with arthritis, it would be worth the fight. The truth is 300,000 kids & teens in the U.S. struggle with this devastating disease. It can mean multiple major surgeries, endless trial-and-error treatments and enduring daily intense pain. It causes delays in education, feelings of isolation and robs kids of their childhood. Be the ONE who helps end arthritis.