Rare Disease Day 2020: Running the Marathon We Thought Was a Race

Rare Disease Day always reminds me of a phrase my dad uses when my doctors miss a symptom and we find the right diagnosis years down the road that if someone had been listening we could have found much sooner.  He always tells me, "Katie, that's why medicine is called a practice".  He means that the profession is never going to be done growing, and we'll never have all the answers about the human body.... and if we do, then medicine will no longer be a practice. 

I wrote a full blog on my diagnosis story here, but it is important to note that my story, despite my diagnosis, continues.  Despite getting a diagnosis of Ehler's Danlos Syndrome in 2016, my physicians and I have continued to work as a team to treat my ever changing condition.  I wanted to take some time today to share a bit about what it takes for me, as far as medical team, to gain/maintain control over a rare disease. 

Currently, we're managing my condition thanks to an engaged primary care provider, 2 neurologist, 2 headache specialists, a cardiologist, an electrocardiologist, a gastroenterologist, an orthopedic surgeon, a pain management specialist, an allergist, a psychologist, and a few miscellaneous others.  In an average week, I have at least 4 appointments with providers to maintain my physical and mental health, which take a  minimum of 12 hours.

As of today, we don't have all the answers, but we're continuing the journey every day!

I want to shout out to my awesome friends and family who keep me grounded every day!

Wishing you Wellness, 

Katie Pearson Mahaffey

Disability Accommodations Advocate

The Technicolor Zebra

@the.technicolor.zebra

@techncolorzebra

the.technicolor.zebra@gmail.com

You can support rare disease warriors today by visiting https://www.rarediseaseday.org/ and making a donation today!