Fight Rare EDS with Direct Patient Advocacy

I have to admit that I had tunnel vision when it comes to patient advocacy.

I naively thought that everyone was direct and honest with their doctors.

I believed that everyone followed the premise that building a trusted relationship with a doctor required open communication.

For me, I’ve always held true to my head-strong family upbringing where my father would frequently tell me, “Honey, I’m not a mind reader. If you don’t tell me, then I can’t help you fix it. Speak up!”

My life experience tallies my fair share of doctors’ appointments, and I guess I didn’t realize that my parents were always teaching me how to be my own advocate−my own voice to share my needs with others. They knew I would have to communicate for myself one day.

If a doctor talked too fast or used verbose medical terms that I didn’t understand, I couldn’t just sit there and nod my head as if I was following along.

I had to speak up.

Once when my doctor was delivering a life-altering diagnosis, I can clearly remember him twirling his penny loafers across the carpeted floor. His news was shattering my world, and he was playing with his shoes.

I had to speak up. And go to confession for using some choice words.

Pursuits to Protect

What happens when a patient or their advocate speaks up, but their words fall on deaf ears? Like parents who advocate for their children with a list of symptoms that continue to be either misdiagnosed or misunderstood?

What happens if a mom like Karen Kelso must “go on a warpath” to get the help and care that her daughter, Sarah, deserves?

Like others who suffer from rare diseases, it took years for Sarah Kelso to finally find a definitive diagnosis of Ehlers-Danlos syndrome (EDS).

Sarah’s journey helps me extend my perspective on patient advocacy and its necessity. Her mother’s voice carries some shock value, “Something wasn’t right. I demanded that her cast be taken off, much to the fury of the orthopedic surgeon.”

Why would an orthopedic surgeon be so angry with a parent who thinks there is unseen problem under the cast?

Take it off and investigate.

If there’s nothing wrong, just put the cast back on. Right?

My empathy soars when Karen shares her daughter’s ultimate frustration, “One of her many doctors finally suggested Sarah needed to see a pain psychologist at CHOC (Children’s Hospital of Orange County). We felt like the crazy card had been thrown. Sarah was beyond frustrated. She felt no one believed her and that it was all in her head.”

The reality was that she was suffering from EDS–and doctors didn’t believe her.

There is tremendous value in Karen’s blog about her daughter’s journey to a diagnosis of EDS.

Although it’s a long, emotionally-charged journey, it’s a true testament to the need for strong patient advocacy.

And a tribute to any parent fighting for a child’s care and health. Go, mom! Go, Karen!


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