Get Cincinnati Children's Hospital to diagnose/treat POTS!!!

Get Cincinnati Children's Hospital to diagnose/treat POTS!!!

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Cate Casey started this petition to Cincinnati Children's Hospital

Hi, my name is Cate Casey! On March 22nd of 2021, I was diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS. Unfortunately, it crushed my plans of going D1 and finishing my high school rowing career. In turn, I’ve made it my personal mission to advocate for this ugly condition that took so much from me. This diagnosis took nearly five months, which as one could imagine, took a huge toll on me emotionally. Over the course of those few months I saw numerous doctors at Children’s varying in specialties.  All but one dismissed me without a nod of acknowledgment of the pain I was experiencing. The implications of dismissing me without even investigating my calls for help was quite possibly as painful as the illness itself. The phrase “you’re okay” was one I heard far too many times. I wasn’t okay. I spoke up. I advocated for myself. But nobody believed me. 

First, it’s important to understand that POTS is a form of dysautonomia, or a disorder of the autonomic nervous system. It’s what regulates functions we don’t consciously control like heart rate, blood pressure and body temperature. The key component of POTS is an exaggerated increase in heart rate upon standing. For a better understanding, my heart rate can shoot up to the 180s as I stand. People with POTS blood vessels do not tighten as they should, which leads to pooling in the lower half of our bodies. So not enough blood travels to our heads, causing us to be dizzy and fatigued. POTS famously goes undiagnosed due to the plethora of symptoms and other conditions it can mimic.

I was completely helpless until a rheumatologist at Cincinnati Children’s Hospital referred me to a POTS specialist all the way in Tennessee. I was diagnosed and continue to receive treatment there. While I am extremely appreciative and thankful to be privileged enough to receive that treatment, I ask that Cincinnati Children’s step up. It’s incredibly upsetting that my only hope for a better quality of life is 250 miles away, while the third highest ranking hospital nationally is 10 miles away. I am asking that Cincinnati Children’s Hospital works to equip their doctors with the resources and knowledge to treat and diagnose POTS, eliminating the emotional stress all too common in the journey of getting a POTS diagnosis. 

At the end of May, I reached out to CCH’s Chief of Staff Dr.Manning Courtney. In her response, Dr.Manning Courtney states “As a leading Children’s Hospital, we are well positioned to grow our current capabilities and make important contributions to the understanding, development, and implementation of treatments for POTS, as well as many other chronic conditions”. It is true that they are in the position to help hundreds of thousands of people, but I have been ignored since this point in my advocacy. They, of all hospitals, have the resources and respect to make a real difference in the POTS community. Along with her response I was paired with a senior advocate, with whom I spoke to in depth about POTS and trusted to pursue my advocacy. However, weeks have passed with no returned calls or emails, and their promise to be my advocate has not held true. I find it very upsetting as well as disrespectful that my advocacy is being ignored, so help me show them I’m not alone!!! 

I encourage each and every one of you to sign this petition. Your one signature will truly be monumental in the effort to find better care for people with POTS! Please share this petition to spread awareness and make a change!!!

0 have signed. Let’s get to 1,500!
At 1,500 signatures, this petition is more likely to get picked up by local news!