About Caring For Zebras
Download the Caring for Zebras Media Kit below..
I could feel the urgent care physician assistant questioning my parenting as I sat, laptop poised on my knee, answering her missives about my son’s ankle.
Why was it swollen and bruised? How did I not know the cause? Could he really be a 7 on the pain scale because he doesn’t appear to be hurting? If he is, why were we here instead of the emergency room? For Pete’s sake, how could I be concerned about a work deadline while sitting here with a sick child?
What that physician assistant didn’t know was that my journey with my son’s illness began more than a decade ago when I thought being aware of disability rights meant not parking in handicapped spaces and being kind to people with obvious disabilities. I wasn’t ignoring my son’s ankle. I simply was concerned for whether it seemed more significant than his typical dislocations and sprains, and I took him to urgent care because as a child living with Ehlers-Danlos Syndrome, he doesn’t mention pain or joint problems until it becomes what would, for another child, be an emergency.
Hi, I’m Brandi Brown, otherwise known as “the mother of Jayden, date of birth –“No, wait, I’m not leaving a message for a doctor or nurse, a practice frequent enough for me that I had to institute daily limits on them.
As a newspaper reporter, I covered the politics of healthcare, housing, and employment. I’ve talked to elected and appointed officials at all levels of government and learned to research and read between the lines of coded statements and interviews. Little did I know when I decided to have a child that those skills would come in handy as I learned to navigate the world of healthcare from a patient perspective. Raising a child who has a rare disease – meaning fewer than one in 200,000 people in the U.S. has it – has broadened my experience with disability issues and helped me to understand the complex maze that is the American healthcare system.
Here at CaringforZebras.com, you’ll read about my story but also the stories that I am trying to tell for others. Among the community of people with or caring for someone with a rare disease, the oft-quoted medical proverb is a source of laughter – or derision, depending on the day. “When you hear hoof beats, think horses not zebras.” Except…sometimes it is zebras. Among the zebras here, you’ll hear from people who have diseases that don’t even have names, parents fighting for their children’s education, citizens working for improved accessibility, and caretakers who are trying to balance medical care and quality of life.