by Katie Steedly Curling, PhD, Writer & Guest Blogger for TSF
Since I moved to Florida 4 years ago, every year I travel 5 and a half hours from Miami to Gainesville for a doctor’s appointment at the Turner Syndrome Center at the University of Florida. After many years of patchwork health care from non-Turner Syndrome specialists -that often put me in the difficult position of coordination, translation, and advocacy – I decided to have my care overseen by a center that understands my unique health needs. I still call upon local health care providers for primary care and gynecological attention, but my overall care is handled by Turner Syndrome specialists at University of Florida.
My hope is that by providing a description of my day at a Turner Syndrome center I will communicate the value of understanding our bodies, demystify the process of Turner Syndrome care, and highlight how thankful I am to have comprehensive knowledge of my health that makes navigating life (and aging) a little easier.
The Cardiac MRI
The day started with a 6:30 a.m. cardiac MRI. The cardiac MRI is not an easy test. Having had a cardiac MRI thirteen years earlier, I knew what was in store. The test takes a long time and is loud. No matter how nice the technicians are, it is still no fun to be stuck in the arm with an IV, rolled into a small doughnut of a machine, asked to breathe and then hold your breath, again and again, for 40 minutes. Tears welled in my eyes as I entered the machine. I was scared and angry that I had to endure the experience. Living with Turner Syndrome makes it necessary to walk this path.
The Heart Specialist
The cardiac MRI ended, and I headed to my next appointment with the heart specialist. The heart specialist is located across campus in the same office as the endocrinologist who manages my care. The logistics are important as anyone who has to run between multiple doctors can attest. Upon arriving at the heart specialist, I had an EKG – a very simple test. The heart specialist read and evaluated the results of the EKG and took a look at my vitals (blood pressure and weight) that her staff had collected. My EKG looked good, but my blood pressure was alarmingly high. We discussed increasing the dosage on my blood pressure medication. My cardiac MRI results would be evaluated in the coming week.
My day ended with a visit to the endocrinologist. Though she focuses on pediatric endocrinology, her practice also includes adult women living with Turner Syndrome. Her insight is invaluable within the Turner Syndrome landscape that often centers on young girls, leaving women to understand their issues without informed guidance. I truly appreciate her perspective. Our annual visits include looking at results from my annual general practitioner physical, discussing the variety of health issues that always seem to come up (like symptoms of hormonal irregularities, blood test results, and lifestyle choices), aligning my prescriptions with the most recent test results, and ordering additional tests (like DEXA scans) as needed. She is the conductor of the complicated orchestra that is my healthcare.
The Journey Continues
After my day in Gainesville, I had a list of things on which to follow-up: more blood tests, a DEXA scan, new prescriptions, a daily home blood pressure regimen. That is how it goes. Vigilance has to be routine. Health issues come up and I have to deal with them. I have a team that supports me. That is what my annual visit provides: a team to keep me on the right health path.
Katie’s blog highlights a widely unmet need in the Turner Syndrome community, which is the lack of access to comprehensive health care. Many people have experienced the challenge of not being able to find knowledgable TS physicians in their area, making it difficult to navigate their health care. You can search for a specialized center of care near you by visiting our website.