Hope for a better tomorrow by Roman Fenner. 

I was born with a hereditary connective tissue disorder called Ehlers Danlos Syndrome, a defect in collagen. A multitude of issues can arise throughout the body, ranging from neurological and vascular symptoms, to problems involving multiple organ systems. What effects me the most right now is Craniocervical Instability, a condition in which the ligaments of the neck can not support the skull. This ends up compromising my cerebrospinal fluid and blood flow going in and out of my brain, along with a kinked brain stem. This is the result of my skull settling into my spine. This ends up sending abnormal signals throughout my brain and body. This week, I am going to have a craniocervical fusion from my skull to my second cervical vertebra. My most common symptoms are prolonged electric shocks/nerve pain across my body, numbness and tingling in my extremities, heavy fatigue, neck pain and inflammation, headaches, pain behind my eyes, muscle tension and spasms, confusion, memory loss, tachycardia, and overall weakness throughout my body. The most frustrating thing about these symptoms is not the pain, but how they take away from my day-to-day life. I always make a conscious effort to make the most of my situations and try to maintain a sense of normalcy. Even though I manage my pain and symptoms okay, progressing cognitive decline has become quite frustrating. I work extra hard to maintain a competitive, above-average GPA, despite how hard it is to get out of bed on a daily basis. Although times can be tough, the pain and struggle are only temporary. The memories serve a purpose of looking back and reflecting on how I have been made into a stronger person. I’m definitely ready to have this surgery to have my anatomy restored, improve my symptoms, and to have a better quality of life. My mom and my sister have had multiple neurosurgeries, and I’ve seen how they’ve been helped each time, literally giving them their lives back. I am thankful to be surrounded by compassionate and willing experts that can imagine what it is like to live with Ehlers Danlos and work relentlessly to help us all struggling in a world lacking in knowledge and full of misdiagnoses, but most importantly hope. We are all the trailblazers for this disorder, and we are creating a new and brighter future filled with awareness and help for future generations with EDS. I look forward to the future, having experienced the lack of knowledge in the medical community regarding EDS and its maladies myself, and it is my hope in the future to have the ability to help other families like mine, so they don’t have to go through such great lengths to receive the proper care they deserve. I’ve come to the conclusion that I have no reason to fear my approaching surgery because everything that I have fought for before, has gifted upon me the wisdom to understand that all of this happens for a reason and improves us not only physically, but mentally and spiritually. 

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