Search

I have enjoyed singing and have been pretty good at it all my life if I say so myself. But after an accident involving a drunk driver early January 1st, 2017 I found myself paralyzed from the neck down unable to speak or breathe, let alone sing. I needed a ventilator because my diaphragm was paralyzed, and it would be like that for about 2 months. Once I was weened off the vent and was able to breathe enough to function I started a portion of rehab where we sang to help our breathing. After getting home 4 months post-injury I decided to keep it going, use my extra time to sing, and get my diaphragm stronger which in turn helps my coughing, blood pressure,e and ability to speak loudly. So I started Seated Covers my YouTube channel where I sing to continue strengthening my diaphragm and enjoying my passion after tragedy .

Diagnostic Odyssey and Life's Ups and Downs My name is Jireh, and I have Fabry Disease. My rare disease journey started with 2 strokes at the age of 30. My first stroke was from a ruptured artery while I was asleep. Thankfully, my wife was able to wake up and call 911. After 3 attempts and almost a week later, doctors were able to place a stent where the artery had ruptured. Upon their workup, doctors found that I had multiple abnormal vessels that ran up and down my neck. They recommended I see a geneticist after being discharged from the hospital. 2 months after my first stroke, I suffered an ischemic stroke—a blockage of blood flow to the brain. After a second gene panel, I was diagnosed with Fabry Disease. Fabry Disease is a progressive diagnosis, meaning that there is no cure. It is caused by a mutation on GLA mutation that leads to an enzyme deficiency which can affect various parts throughout the body. A month after my diagnosis, I started IV enzyme replacement therapy. The following months, I’d progress through rehab, continue infusions, and see improvements. However, after 6 months from my initial medical leave, I was informed that my job could not accommodate my role as an oncology research nurse. After finding out I would lose my job, I experienced a “mini-stroke.” I felt so defeated as every time I’d make progress, I was again hospitalized. A few months later, I’d finish physical therapy. But just a week after celebrating my birthday, I was hospitalized again for seizures. Through this journey, I’ve learned to lean on my faith and my loved ones. To take time to embrace the gift of today. That no matter what your abilities are, you can still live each day with purpose. “Be joyful in hope, patient in affliction, faithful in prayer” – Romans 12:12

I Thought Pain was Normal I have always led an active lifestyle, running, hiking, and playing tennis, and soccer since childhood. Despite staying active, I often experienced pain in my legs and thought it was just a normal part of being active. It wasn’t until college that the pain became severe enough to make me question whether it needed medical attention. Pain and its Effect on Daily Activities The pain eventually began interfering with even the simplest daily activities—like putting on pants or stepping in and out of the shower. Fatefully, I was studying to become an occupational therapist, a profession dedicated to helping people engage in meaningful activities of daily life. Yet here I was, struggling to engage in my own favorite activities and facing difficulty with basic tasks because of the pain. My First Diagnosis Right after college, the pain in my hips became unbearable. After consulting with an orthopedic surgeon, I was diagnosed with femoroacetabular  impingement (FAI) and a labral tear in both hips. Essentially, the head of my femur wasn’t sitting properly in my hip socket, which caused a tear in the cartilage around the joint. I underwent three arthroscopic surgeries—two on my right hip and one on my left. Though the surgeries provided some initial relief, the pain never fully went away. The Answer to My Pain: Miserable Malalignment Syndrome Three years later, I could barely walk because of the pain. My legs looked and felt crooked, and my knees knocked together. I consulted several doctors before finding one who diagnosed me with a condition called “ miserable malalignment syndrome .” Despite its unfortunate—and accurate—name, I was relieved to have a diagnosis after years of struggling with chronic pain. What is Miserable Malalignment Syndrome? Miserable malalignment syndrome (MMS) is a condition in which the bones in the legs are abnormally rotated. In my case, my femurs (thigh bones) pointed inward, while my tibias (lower leg bones) pointed outward, causing significant pain in the hips, knees, and ankles. My Surgical Journey Since the start of my journey, I have undergone nine surgeries, with four more to go. Four of these procedures are " osteotomies ," in which my femurs and tibias are surgically broken and realigned, then stabilized with plates and screws. In addition, I will need hardware removal surgeries and labral  reconstructions —a procedure where the torn cartilage in my hip joint will be removed and replaced with a cadaver labrum. Finding Purpose Through the Pain As I approach my tenth leg surgery and reflect on my journey so far, I have come to realize how much I have learned along the way. There were many times when I felt like giving up—both on life and on my recovery—because I couldn’t engage in those things I loved the most. My path out of despair was finding  purposeful and meaningful activities in my daily life, including beginning a book about my MMS journey, writing poetry, learning a new language, and educating others about this condition on my Instagram account and through podcasts. This emphasis on finding purpose is also a core principle of occupational therapy. Healing Through the Break Sometimes, we need to be broken in order to heal. My legs were surgically broken so they could be put back together. Like a bone mending after breaking, I am growing stronger with each day of recovery. Although I have felt both physically and emotionally broken at times, I know that staying engaged in meaningful activities will help my healing process.

Is product of the day B06XHS9DT5 18+ 18+ 18+ Choose main category Add Upload Image JPG / PNG files only Add posts Camilla Can Community Add post to product The Long Covid Chef Add post to product A boy's journey with dyslexia Add post to product Being Part Of The Chronic Conversation! Add post to product Kiersten’s story Add post to product Navigating a Rare Path: My Journey Through the Healthcare System Add post to product A story about a freak of nature Add post to product Sparkling through adversity Add post to product Life as a disabled mum Add post to product Bold Journey Add post to product A Miracle In the Making Add post to product My story of tribulations and victories Add post to product From Drop Foot to Disability Add post to product Author Makayla Spencer: Origin Story Add post to product Accepting Disability at a Young Age Add post to product Filter by selected posts Load more Delete Product back Update Failed update products

Just a minute, we’re fixing something here. (Error 500) We hope to be back online very soon.

Is product of the day B001HP7AQE 18+ 18+ 18+ Choose main category Add Upload Image JPG / PNG files only Add posts Camilla Can Community Add post to product The Long Covid Chef Add post to product A boy's journey with dyslexia Add post to product Being Part Of The Chronic Conversation! Add post to product Kiersten’s story Add post to product Navigating a Rare Path: My Journey Through the Healthcare System Add post to product A story about a freak of nature Add post to product Sparkling through adversity Add post to product Life as a disabled mum Add post to product Bold Journey Add post to product A Miracle In the Making Add post to product My story of tribulations and victories Add post to product From Drop Foot to Disability Add post to product Author Makayla Spencer: Origin Story Add post to product Accepting Disability at a Young Age Add post to product Filter by selected posts Load more Delete Product back Update Failed update products