THE PATIENT VOICE

Welcome to Issue 9!

This week's feature patient is Ellen. Ellen shines a light on one of the most common access challenges we see - a lack of knowledgeable healthcare providers.

Of course, that doesn’t mean doctors are not knowledgeable, rather it points to the growing pool of rare and underserved diseases in our country that require specialist expertise. Patients with diseases like Gastroparesis, Ehlers Danlos Syndrome, Lupus, or any number of other autoimmune diseases require medical expertise that isn’t normally found at community hospitals or small physician practices. What’s even more frustrating is, even if there are local specialists, they then need to also participate in a patient’s health insurance. And if they do participate, what about the treatments for those diseases? Are they on formulary? What about out-of-pocket costs or fail first therapies?

What we then see is not just one hoop to jump through but something more like the challenge of Odysseus who proved his identity by firing an arrow through the multiple consecutive ‘hoops’ - a feat so rare it instantly proved his claim. To succeed we have to get through not just the first, but all the consecutive barriers. 

We shouldn’t have to be mythological heroes just to get the healthcare we need. 

-- Terry

Not too far in my past, my Instagram served as one of my only connections to the outside world. I have never been able to drive due to syncope from my postural orthostatic tachycardia syndrome. I was left relearning to walk along with moving home from university after developing Guillain Barre syndrome, and I was having allergic reactions to what seemed like everything (thanks to then undiagnosed mast cell activation syndrome).

Chronic illness and disability can be extremely isolating -- for some of us social media can make up our social life. A month before my world was flipped upside down by Guillain Barre, I had started an Instagram for my new service dog.  My goal was to share with my family, friends, and professors how my new furry shadow would give me the independence I so badly needed, and maybe meet someone else with a service dog along the way. Imagine my surprise when thousands of complete strangers started being interested in how my service dog helped me stay alive and navigate daily life when my days revolved around tackling physical therapy, lots of much needed sleep, managing all my conditions, traveling to different doctors, and attempting to regulate my ever plummeting blood sugar.

In between it all I dedicated what little energy I had to use my story to help others like me. On Instagram I brought everyone along with me through all the fun and the tough times, sharing my always present hope along the way. I started helping get proclamations for awareness days, partnered with organizations to raise awareness for specific diseases, created a company that helped fund other service dogs, did interviews, formed a book club featuring authors with chronic illness, and did all of this from my bed. Instagram has given me some of my best friends, incredible opportunities, and shown me that no matter what, we can be the change we want to see in the world!

- Cienna