Maya was diagnosed with Juvenile Dermatomyositis at age 8

 

Rogers family

Simple tasks that became impossible because of rheumatic disease:

  • Forming a fist
  • Standing
  • Walking

Overview

Maya Rogers was a normal eight-year-old child until her family noticed subtle symptoms that led to a diagnosis of juvenile arthritis. Limited access to a rheumatologist and financial and insurance restrictions forced the entire Rogers family to make tough decisions for the health of Maya. With the help of a rheumatologist and Maya’s positive attitude, the family found a way to live with her disease and wants to share their story to provide support for other families dealing with similar situations.

Maya’s Story: Subtle Symptoms; Serious Illness

At eight years old, Maya was diagnosed with juvenile dermatomyositis – a rheumatic disease in children that causes skin rash and muscle inflammation resulting in weak muscles. She had been experiencing subtle symptoms that her parents, Chris and Christy Rogers, didn’t recognize until a serious case of strep throat and walking pneumonia led them to the conclusion that something was seriously wrong.

Maya eventually ended up in the emergency room with dehydration and was hospitalized for 13 weeks. Her illness progressed and during a two-year period, Maya felt sick every day. It took 10 weeks of visiting different doctors and undergoing numerous tests to finally obtain a diagnosis of JDM. And with that, her primary care provider referred the family to an infectious disease physician and a rheumatologist.

Living with a Rheumatic Disease: Rheumatology Shortage and High Costs

Due to the extreme shortage of pediatric rheumatologists, the Rogers family has to regularly travel two hours to see a rheumatologist. Limited access to a rheumatologist has also impacted the Rogers’ work schedule – requiring the family to take several days off to make one trip to the rheumatologist.

To complicate matters further, the Rogers family did not have health insurance for their children, and Maya’s 13-week hospital bill was very costly. When the Rogers’ first applied for insurance, they were turned down from four companies as a result of Maya’s pre-existing condition. Luckily, the family is now on a Primary Care Case Management program that coordinates all health care services. In addition, Chris and Christy must remain below a certain income level to stay on the PCCM program, making job options extremely limited. For the Rogers family, Maya’s disease — and its associated costs — have caused difficulties the average family rarely faces and has impacted the future of their family.

Maya’s Window of Opportunity: Back to Normal

Despite being in a wheelchair and having to take a variety of medications, Maya has a relatively normal life. She is back in school after being out for nearly two years and is taking online classes. And, just like her peers, Maya loves reading, drawing, making sculptures out of clay, and playing with Legos. Chris and Christy say that Maya even sings and dances and that it’s her positive attitude that carries her through.

The Rogers’ advice for others dealing with a child who might have a rheumatic disease is to, “get to a pediatric rheumatologist as soon as possible.” They also encourage parents to find other parents dealing with the same disease and offer each other moral support. Chris and Christy met other parents at a medical conference with whom they have maintained a relationship. Before they met these parents, Chris and Christy felt alone and believed they were the only ones dealing with a life-altering disease like Maya’s.

Limited access to a rheumatologist almost prevented Maya and the Rogers family from finding their window of opportunity, but you can help ensure that this is not the case for millions of others with rheumatic diseases.