For Cassandra Calkins, arthritis and autoimmune disorders are an all too familiar threat that affects not only her, but also her family’s life. She comes from a dynasty of sufferers; a great-grandmother and grandfather with rheumatoid arthritis, an aunt with multiple sclerosis, and a mother with fibromyalgia. When she was diagnosed with juvenile psoriatic arthritis & juvenile dermatomyositis at age twelve, she unfortunately fell victim to heredity.
Prior to her diagnosis, she was prescribed an assortment of medications for pain that did nothing to help her condition and Cassandra was hospitalized in 2011 due to her inability to walk. While under doctor care and after a thorough amount of testing, it was concluded that she did indeed suffer from arthritis. After a new prescription of monthly IVIg, Rituxan, and Remicade infusions, Cassandra was feeling great – for the following six months at least. After her family relocated and had to see another rheumatologist who took her off of her infusions, Cassandra’s condition worsened again.
“It was so hard for me after I was taken off the infusions,” she admitted. “They had me doing great and took it away. I want to get back to feeling good again.”
Her struggles did not end there. Her mother lost her job because she was constantly missing work to take Cassandra to her doctor’s appointments, Cassandra had to stop her extracurricular activities such as competing in Tae Kwon Do and cheerleading, and half of the time she was still reliant on her wheelchair to get around. She even had deafness in her right ear and hearing loss in her left, both of which doctors associated with her arthritis.
Socially, Cassandra struggled as well as she was not welcomed by her peers in fear that they would “catch” her disease. In school, because she had an individualized education program, many teachers would neglect it and subsequently, she would fall behind academically. However, in spite of it all, she remained positive. “My family is a strong unit,” she said. “We will make it through and conquer this.”
Today, Cassandra has big dreams and though she is just fourteen years old, would like to pursue a career in pediatric rheumatology, because she knows firsthand the detrimental effects arthritis can reap, especially on children. “There are so many children out there that need help and cannot find it,” she commented. But she would like to be the difference. She wants to make a change. Currently she is taking 23 medications per day, along with her infusions, and is planning on visiting another pediatric rheumatologist in May.
Despite everything, Cassandra is motivated and just wants to be accepted, and she is trying her best to make it all happen. Though her movements are limited and some days it hurts even to just get out of bed in the morning, she does it anyway, because she’s driven. She currently is enrolled in a beginner dance class and has a very understanding and supportive teacher who helps her succeed.
She even built her own team, “Cassandra’s Journey” for Austin, Texas’ Arthritis Walk in April, a cause she feels passionate about. “I want to feel good like everyone else and be “normal” like all the other kids,” she says. “My message to everyone living with any disease is stay positive and you will make it through this. You will strive to be a better individual. This is a hurdle that we must overcome. Persevere.”
To learn more about arthritis research and juvenile arthritis or to make a donation visit http://CureArthritis.org
