‘My first full sentence was, ‘My back hurts.’ I can’t imagine how heartbreaking that was for my mom.’: Chronic illness warrior says ‘I am brave and strong’

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“My name is Savannah. I’m a singer, dancer, actress, sports fan, and college student who also happens to be chronically ill.

As a newborn and young child, I cried constantly. Not the normal colicky baby/toddler cry, but more like a constant cry of being in pain. My mom had an instinct something wasn’t quite right and took me to many different doctors. She was turned away and was even told I was just ‘jealous’ of my younger sister. Even after being turned away, she continued to advocate for me. My first full sentence was, ‘My back hurts.’ I can’t imagine how heartbreaking that was for my mom, to finally have the confirmation I was in pain.

Little girl in the hospital holding teddy bear
Courtesy of Savannah Cooper

I had a wonderful childhood, although it was filled with a lot of pain and mysterious symptoms. I started dancing at the age of 3 and absolutely LOVED it. I thrived in school and was a very quiet child. I preferred to spend my time reading books and in dance class. My life was pretty ‘normal’ besides the unexplainable pain, incontinence, and other symptoms I was experiencing—with no answers.

I continued struggling with these mysterious symptoms and visited different physicians hoping for answers. Eventually, I was diagnosed with Tethered Cord Syndrome and Ehlers Danlos Syndrome. These diagnoses were the missing puzzle pieces to the last 7 years of confusion. The weird symptoms and pain finally added up and made sense to my family and my physicians.

Little girl in wheelchair at hospital
Courtesy of Savannah Cooper

I had major spine surgery to release my spinal tether and had to relearn how to walk. Soon after my procedure I was back in dance class and doing the things I loved the most. My back pain was gone and I was finally able to live a pretty normal life. This ‘normal’ life of mine did include the occasional joint pain, doctor’s appointments, geneticist appointments, physical therapy sessions, etc. but it was a lot better than living without any answers to the mystery of my pain.

Woman in hospital
Courtesy of Savannah Cooper

I lived that way up until my early middle school years. I continued dancing, singing, acting, and even attended a performing arts school. I had an incredible support system at my dance studio and school, who were aware of my medical issues and I was used to explaining what was ‘wrong’ to other kids my age.

I had previously experienced UTIs and incontinence due to having nerve damage from my tethered spinal cord, but in my early middle school years, I started experiencing chronic kidney infections. These infections would cause me to become incredibly ill and I would suffer from extreme nausea, fatigue, kidney pain, and bladder pain. The infections caused me to be on a constant regimen of oral antibiotics and other medication in order to hopefully stop the frequency of them!

Woman and nurse celebrating
Courtesy of Savannah Cooper

I traveled across the country in search of answers as to why I was having these chronic kidney infections. I started many different medications, had seven PICC lines, countless rounds of IV antibiotics, suffered from hair loss, visited countless physicians and specialists, and had multiple major surgeries in order to ‘fix’ the problem. These chronic infections began in 2013. It is now 2021, I am a junior in college, and as I am writing this… I currently have a kidney infection.

Almost 8 years later and I’m still dealing with chronic kidney infections. What happened in between that time? I’ll tell ya!

Courtesy of Savannah Cooper

These chronic kidney infections have impacted almost every part of my life. Starting off for the first few years, I was hopeful we would be able to find the source and solve the issue. We tried many different combinations of medication, rounds of IV antibiotics, and other treatments hoping it would stop the infections. I had a partial nephrectomy my freshman year of high school in hopes the area of my kidney that was removed was the area causing the infections. I had a few months of relief, only to have the infections come back again. I have had extreme amounts of testing done, and even had doctors invent tests for me! I can’t even count the number of times I have had to drink large amounts of liquids so that they could do scans on my kidneys and bladder.

Woman getting IV inserted at hospital
Courtesy of Savannah Cooper

We are now at the point of treating each infection as it comes, making sure I am as healthy as possible in between infections and making sure I am able to function at school as well as in my regular daily life. Right now, my medical team believes there is a tiny connection between my colon and kidneys. This tiny connection allows bacteria to flow from my colon and into my kidneys, causing me to have infections. There is no rhyme or reason to the timing between infections, and we are just trying to treat them as they come. This connection is likely due to the fact that I have Ehlers Danlos Syndrome, which affects the collagen and elasticity of my tissues and could have been the cause of this tiny connection. I have had three major surgeries in hopes of correcting this issue and separating the colon and kidney. After each surgery, the infections have returned. Finding a small connection is like finding a needle in a haystack.

Woman posing in front of colorful background
Courtesy of Savannah Cooper

We have traveled to every ‘best’ doctor and specialist, but have not been able to find any solid answers. My mom and I have been questioned by physicians and hospitals because they did not fully believe me and my illness. That has been the most heartbreaking part of my journey. To travel hopefully to heralded physicians who then did not believe me, did not take the time to listen to me, or thought my family and I were the cause of my health issues is exhausting and devastating. Instead of being willing to work outside the box and do some extra research, these physicians questioned my and my family without being willing to have an open mind.

Dancer on stage
Courtesy of Savannah Cooper

For a while, I would ask daily, ‘Why me?’ I was so frustrated and angry at the world and didn’t understand why I had to endure this much pain and trauma. I’ve now learned being angry and asking those questions only hurts me in the end. I have instead focused on my goal of becoming a Broadway performer, as well as starting my own non-profit organization and advocating for patients and families like myself. Through my non-profit organization, I have been able to speak to students, physicians, patients, and families, as well as the general community about chronic illness. Being able to share my story with the world helps me to stay motivated, and push through the daily obstacles I face.

Being a chronically ill patient comes with a ton of ups and downs. I am beyond thankful to have such an amazing family and support system that keeps me going. I have now embraced my chronic illness, and let it motivate me to advocate for others as well as myself. I am following my dreams of becoming a Broadway performer while navigating college and daily life as a chronically ill young adult. This journey has been incredibly difficult, but it has forced me to become incredibly brave, strong, and smart.

Woman in beautiful red dress
Courtesy of Savannah Cooper

I am forever grateful for the caring nurses, and dedicated physicians that have literally kept me alive. Without them, I wouldn’t be able to be attending my dream school, following my dreams, or living life to the fullest. My dream team of Dr. Katrina Hood and Dr. Sean McTiegue are my relentless advocates and biggest supporters!

Follow along on my journey as a performer who also happens to be chronically ill!”

Woman celebrating her strength
Courtesy of Savannah Cooper

This story was submitted to Love What Matters by Savannah Cooper from Lexington, KY. You can follow their journey on Instagram here and here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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