Searching for Answers BY V. A. WEST
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efore I can delve into my visit with Vanderbilt’s Undiagnosed Disease Network clinic in Nashville, Tennessee, a lot of context is needed. Explaining my story leading up to this point is important; maybe someone reading this could relate and try this avenue like I did. I have a long and complicated medical history. I have an unknown pain disorder (which has forced me to use a cane for over four years), bile-acid malabsorption, free-running circadian rhythm disorder, insomnia, sensory issues, generalized anxiety, social anxiety, depression, memory issues, complex post-traumatic stress disorder, and a multitude of other minor health problems. I have to micromanage my everyday life in order to walk, drive, spend time with friends/family, and do anything else “normal” people do. I have been receiving disability benefits since I turned twenty, and I’ve never been able to work or go to college. In my twenty-four years of life, I’ve already had more procedures (colonoscopies, endoscopes, all other GI tests, gall bladder removal,
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kidney stone removal, bowel obstruction, etc.), tests (blood, urine, stool, MRI, ultrasounds, CT scans, traditional x-rays, sleep studies, etc.), and medications (well over four dozen) than most people will in their entire lives. All of this is only scratching the surface; my diagnoses, test results, and other stuff do not explain why my everyday struggles are so severe. After trying everything I could, the Vanderbilt UDN accepted my case, and my last chance for answers or solutions has been put into their hands. The process began in September of 2021, with the actual appointment happening on August 24, 2023. In that two-year time frame, blood tests were sent by myself and my mom. Between that time and the time of my appointment, various paperwork was sent, and many calls and emails were exchanged; it was exhausting. I probably had to communicate more in the final month leading up to the appointment than I did during the previous twenty-two months (travel arrangements, things I needed to do the night before I arrived, COVID
questions, etc.). Communication was generally great, but those last few weeks were frantic, and I was bombarded with emails and calls until the day my mom and I left. The drive was around five hours, which was very hard on my body. Even though I wasn’t the one driving, my health situation made staying in one place for a long time very taxing. This was also during a notable heatwave between August 23 and 25th. On August 24th the day started at 7:00 am and we wouldn’t be back at the hotel until after 4:00 pm. During those nine hours, I had appointments with a geneticist, a neurologist, and an internal medicine specialist; I also had two blood tests, two urine tests, and a skin biopsy. The entire day was probably the most physically and mentally exhausting of my entire life, but it was worth it and I’m mostly satisfied with what happened. My appointment with the geneticist, the first doctor I saw, was where I received the most important information. He gave me the results of the genome sequencing, a complex test that analyzes DNA and tries to
