Faces of Courage. Rachael
Hi, I'm Rachael. I'm 21 years old. As many of the girls who have shared here, I have EDS and its' comorbid conditions including mast cell disorder, spinal instability, POTS, adrenal insufficiency, a blood clotting disorder, seizures, and intracranial hypertension. All of which present their own unique challenges.
When I was a child, we didn't know I had this genetic disorder. I often had "growing pains" and daily stomach issues (we'd later find out are from mast cell.) Other than that, I went about my life as a very active child and teen. I hung out with friends, danced constantly and enjoyed ballet immensely. I pushed through a lot of pain to dance. Often people say they regret their time doing things such as dance with EDS, but I personally do not regret a moment of it. It helped make me who I am, taught me valuable lessons, strengthened my relationship with God, and it will always be a part of me.
Around age 13, I began to get dizzy, had a racing heart, tremors and blacked out easily. I was eventually diagnosed with POTS. After some time, I was diagnosed with EDS due to pain throughout my entire body. I was given a few medications and told to do PT. I didn't think too much of it and wasn't going to let it stop me.
Shortly after this diagnosis, I started to experience extreme headaches daily that nothing relieved, along with spinal pain and very odd neurological symptoms. My geneticist for EDS at Cincinnati Children's soon sent me to a specialist in another state for surgical intervention. They suspected severe issues outside of their realm of expertise. We knew this was going to be a roller coaster based on my many diagnoses from the neurosurgeon I saw. I quietly prepared myself for a sort of war- one only God could fight.
Although I appeared "healthy" to most, I was smiling through pain while my body was falling apart inside. With vital arteries at risk and a compressed brain stem, I could not put surgery off. I have undergone surgeries for a spine that was not stable enough to hold me together on it's own, as well as a brain with way too much pressure on it. Every part of my body is unusually loose, even for someone with EDS. Many people do not know this, but it has only been 3 years since my first surgery. I've had over 20 surgeries since then as issues have needed quick attention. We've had to piece me back together so I can safely function.
One of the most troubling illnesses I have is high brain pressure, because of the indescribable pain and symptoms it presents. I began to struggle with this around age 15, but it wasn't until last year in a very dire situation I started receiving treatment for this condition. I am still in the midst of this now, with yet another brilliant specialist. Unfortunately, a severe condition ignored far too long by doctors is taking quite some time to control.
With a fully fused spine, stent and shunt constantly draining my brain, I'm slowly discovering how to live and be the "new me." This journey is not easy, but I've met the most incredible souls along the way, many of whom are my best friends. I treasure my friendships with these girls who have been there for me, many of them quite literally. The ones who aren't afraid to love the broken and sit in the unknown with you? These are true friends. We've spent more than enough time together in waiting rooms, pre-op, hospital rooms, and Ronald McDonald Houses. We always joked we should be on a beach somewhere instead. Monica is making this a reality and I am grateful for the invitation to go relax with our zebra tribe.
4/15/2018 05:41:38 am
Rachel is my niece I have watched her suffer through all of this horrible disease. Her faith in God has kept her fighting day by day. She is a model for others to never give up. My prayers are always with her. I just found out that it runs in our family my nephew and a couple of his children have it.
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