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Adapting life with Cerebral Palsy I’m Danny And im a para athlete, nursery worker and a disability advocate. I have hemiplegia on my left side. My Cerebral Palsy is quite mild and cannot be seen straight away unless you know what you’re looking for as most times I can hide it. Since I’ve worked on my Cerebral palsy from an early age I’m now able to do things most people thought I couldn’t, living with CP has its tough times but I work through them and adapt them where I need to. i have made an E book for adaptation s that can be made to help exercise with confidence. I’m also a new parent, I have a 6 month old little boy who I absolutely adore, being a parent with CP has many challenges but I am to show what it’s like through my experiences and give tips on how I adapt life with a baby to hopefully help others. I do social media and my own page showing my life with cerebral palsy and everyday tasks and ways to exercise and my journey to become a Paralympian. My aim is to help educate people about how people with CP live their lives and careers just like other people on the world We need to be shown more as there are many types of disabilities in the world and I believe we need to help others see this Follow me on Instagram @dan_hemihelp and TikTok (theCPDad) .

My name is Danielle, and I was born with a congenital myopathy of unknown origin. Since the cause remains unidentified even after 30 years, it’s difficult to determine whether my other chronic conditions, such as dysautonomia, severe GI problems, and migraines, are related to it. I had muscle biopsies at 8 months and 5 years old, but both results were inconclusive. Around the age of 20, my geneticist physician recommended exome sequencing tests. Ultimately, the results raised more questions than answers. Now that technology has advanced, my 25-year-old muscle biopsy sample (which the pathology department luckily still had) will be sent out for whole genome and RNA sequencing testing. Perhaps I will get more answers this time, but living with a largely undiagnosed condition has taught me many lessons. One is the importance of writing my own story. Although knowledge is power, and I’m actively seeking a diagnosis, having nothing to "Google" has been freeing in some ways. It has helped me care less about what "society" thinks, because we only have one life, and it is unique to each of us. This realization has given me confidence in creating my "Daniellevates" content, a zest for traveling, and has made me more fearless in my advocacy endeavors. Surrendering to the unknown has allowed me to pursue what feels fulfilling to me. While my spiritual beliefs are deeply rooted in Christianity, I enjoy learning about other religions to find commonalities. I figure that if a belief is shared across different systems, it must hold some credibility. This "surrender to the unknown" ideology leaves room for my belief in God’s presence in my life, but it also ties into one of my favorite parables about the Taoist farmer. Choosing to remain neutral about my health and disability allows me to view each moment as an opportunity. In difficult times, it can be hard to find hope. You don’t always have to be hopeful, but staying curious is essential. You don’t need to believe that something good is around the corner, but it's important to be open to the possibility that it might be. Asking "why?" is sometimes seen negatively when it comes to faith or the disability experience. It’s not always easy to accept life’s circumstances without asking, "Why me?" I choose to accept that these "why me?" thoughts may arise from time to time, but not holding onto them is key. Moreover, "why me?" can be reframed as a positive question. Why am I in this situation right now? What am I supposed to learn about myself and my strengths in this moment? Who might need help that I am uniquely qualified to offer? Is this an opportunity for an unexpected detour in life? Life’s unstoppable forces can move us into lanes we never anticipated, but we are capable of making powerful moves ourselves. Remembering that power is crucial. ______________________________________________________ My "Daniellevates" content is all about elevating ideas about disability, chronic illness, and rare disease through humor, education, and adventures. You can find me on YouTube with long-form vlogs with accessibility reviews under the username "Daniellevates." I am also "Daniellevates" on TikTok, but on Instagram, I had to add an underscore before, so the username is "_Daniellevates." Thanks for reading!

Why I started WearAble by Lega As a person with a disability, I’ve spent most of my life problem-solving—not just around mobility, but around something as basic as getting dressed. Throughout my career—whether as a Paralympic swimmer, entrepreneur, or Member of the European Parliament—I needed to look presentable and professional. But regular clothing simply didn’t fit. Not because of personal style or preference, but because I, like so many others, have a unique body that standard clothing was never designed for. So I did what I had to do: I turned to very expensive tailors. It was the only way I could get clothes that truly fit me—clothes that didn’t pinch, bunch, or hang in the wrong places because I use a wheelchair or have an unusual posture. It worked, but it wasn’t fair. And it certainly wasn’t accessible for most people. That’s what led me to create  WearAble by Lega . WearAble is not just another clothing brand. It’s a global online platform where anyone with a disability or unique body shape can access tailor-made fashion directly from their computer or phone. Whether you’re seated all day, short-statured, have scoliosis, or simply don’t fit standard sizing, you deserve to wear clothes that actually fit  you . This is not simply adaptive clothing. This is real fashion. Designed with dignity. Built for confidence. Tailored for you. I created WearAble so no one else would have to go through what I went through just to feel comfortable and seen. And I’d love to hear your thoughts—either here or on our Facebook page. Your feedback matters. Let’s change fashion. For real this time. — David Lega

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 .

My journey to discovering CIRS Hi everyone! : ) My name is Niki and I'm a Canadian mama of one amazing little boy named Henry and three crazy dogs Oakley, Jazz and Rory. I used to be a waitress and an early childhood educator, a world traveller and a competitive allstar athlete, until my life was destroyed by toxic mold. Since then I have been bed/housebound and unable to work for nearly five years. I was completely clueless to what mold and its toxic byproducts are capable of until it happened to me. I am passionate, fired up and hell bent on educating anyone that will listen! I truly never want anyone to have to go through what I have, due to a lack of knowledge to protect themselves. I moved into an apartment and a new job at a school in a new town and over the course of 2.5 years I began getting sicker and sicker. It started off with symptoms like breathing difficulties and recurring bronchitis and grew to chronically enlarged lymph nodes and severe fatigue. By 2020 I had been there over 2 years and I began to experience severely abnormal head sensations and at this point I knew something was seriously wrong. We began to notice water damage and humidity issues which included damp walls and black mold on the bottom side of our box spring mattress. The school I worked at was shut down. I was STILL uneducated on how poisonous these nanosized fragments that are a secondary metabolite of mold can be, so I stayed. Mycotoxins continued to poison me further and on October 8th 2020, I woke up in a severe health crisis. My condition had seemingly collapsed overnight. It exploded into a body wide systemic illness. Causing symptoms in every body system and organ there is. I developed horners syndrome which caused nerve damage on my sympathetic nerve that controls my pupils and facial muscles. My pupils presented as alarmingly uneven sizes and my eye brow drooped. I developed the most extreme head pressure that affected my ability to think and remember anything. I felt like I was breathing through a straw and had severe chronic nausea. I experience severe weakness, insane fatigue and insomnia- honestly the myriad of symptoms are endless. I’ve developed over sixty symptoms. I went to the emergency room 10 times and saw countless specialists who had no clue what this was. I had multiple MRIs including one of the brain, chest and abdomen. I had many CT scans and ultrasounds, biopsies, countless blood tests and even a spinal tap. After finding no other explanation, my diagnosis was decided by a grouping cluster of symptoms. MECFS, myalgic encephalomyelitis. "No cure, no treatment, live with it." my doctor said. I then searched for experts and we sent my urine, blood and nasal swabs worldwide, to the US and Germany to find my root cause. These tests came back with high mycotoxin levels, and after research I learnt of CIRS. A chronic inflammatory response syndrome caused by the toxic components found in water damaged buildings. I learnt of my genetic mutations that make me more susceptible to mold toxins. We also discovered coinfections of lyme. I developed occipital neuralgia, a severe migraine disorder, and more conditions than I like to count. I am determined to reverse my health problems and after many tiring years of chronic illness and suffering I can tell you that I am still not giving up. I dedicate much of my time to researching any way I can find to improve my health and fight back. Lowering my toxic load by detoxing (I was amazed to learn that so many of us with methylation issues and impaired detox pathways cannot detox a toxic exposure of this magnitude on our own), by changing my everyday products to those with less toxins, changing my diet and trying alternative treatments. This illness took my job, my friends, my home, my health, my possessions, everything it could. I have suffered in ways I can't even put into words, ways I didn't even think were possible, but I'm still here. I believe that with perseverance, real effort and time I will figure out how to cure an incurable illness. I am of the unlucky grouping of people who do not get better after just leaving the source of exposure. The toxins colonized within my body and caused a chronic inflammatory reaction. My message to everyone is that, just because the health e ffects of mold aren't known so mainstream, do not underestimate what it is capable of. It can have a profound impact on your health. It can present as many other diseases, it's called the great masquerader for that reason. It can be lurking in your home, nearly undetectable. I urge you to look deeper into the root causes of your conditions because maybe just maybe there will be another way to attempt to treat these life altering diseases. If I can help even one person to avoid an experience like mine, then it'll all have been worth it. You can follow my journey at @chasingwellness8 "I have traveled through madness to find me."

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.

Jessie is a resilient and inspiring individual who has turned a spinal cord injury, which left him unable to walk, into a source of strength and determination. Despite this life-changing challenge, Jessie has pursued his goals with unwavering passion and optimism, proving that limitations are often just a matter of perspective. With a bachelor’s degree in anthropology, Jessie has taken a creative and impactful route as a sit-down comedian, filling venues with sold-out performances that blend humor and powerful storytelling. Beyond comedy, he serves as a dedicated high school basketball coach, demonstrating leadership and breaking stereotypes about what people with disabilities can achieve. Jessie firmly believes that his wheelchair is not a limitation but a tool that empowers him to redefine success on his terms. A passionate advocate for disability representation, Jessie uses his platform to challenge societal perceptions and celebrate diversity. He has appeared on Good Morning America, where he promoted adaptive clothing, and has collaborated with major brands to champion inclusivity. Jessie’s vision extends to empowering the next generation through a children’s book series he is currently developing. The series focuses on raising disability awareness in urban communities, fostering understanding, and celebrating differences. Jessie’s philosophy is clear: he views his disability as a superpower, not a barrier, and refuses to make excuses. Through his achievements, advocacy, and creative endeavors, Jessie continues to inspire others to embrace their unique abilities and live life without limits.

I was an executive chef and director of operations at one of Tampa’s premier catering companies when I contracted the Delta variant of COVID-19 in August 2021. After two weeks of battling illness at home, my condition worsened to the point where I could no longer breathe, prompting my partner to call an ambulance. Upon arrival at the hospital, I was intubated and placed on a ventilator within 24 hours. Shortly after, I was put into a medically induced coma to allow my body to heal. The doctors were uncertain I would wake up and advised my family to prepare for the worst. When I finally awoke, I was paralyzed from the neck down, likely due to COVID-induced Guillain-Barré syndrome. I faced the daunting challenge of relearning basic functions through physical and occupational therapy—talking, walking, feeding myself, and even putting on socks. Four months later, I was released from the hospital in a wheelchair, unsure of my recovery journey. Just four weeks after my discharge, I was diagnosed with Long COVID. While some symptoms improved, others intensified. Today, I live with Long COVID, Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Rheumatoid Arthritis (RA), and suspected Fibromyalgia. I was disabled by COVID. I can only stand for about 3 to 5 minutes at a time and walk approximately 50 feet before experiencing severe fatigue. Daily, I endure chronic pain that feels like waking up with the flu, the worst hangover, and having been in a terrible car accident—every single day. My brain fog is a frustrating reality; it’s a dismissive term for the significant word-finding difficulties and memory issues I face. I am about 75% housebound. When I first learned about Long COVID, I felt profoundly alone. Many people didn’t believe me, having experienced only mild COVID symptoms themselves. They simply couldn’t fathom how someone could suffer so severely from “just” COVID. My five-year live-in relationship ended, I couldn’t return to the job I loved, and I felt lost. I moved back in with my supportive family, who continue to be my caretakers. From this experience, Bloom-19, a Long COVID advocacy initiative, was born out of my desire to help others feel less isolated and to share my journey of healing through food. As The Long COVID Chef, I aim to dismantle ableist narratives by creating recipes friendly to those with chronic illnesses. I focus on gluten-free, dairy-free, and refined sugar-free options while using shortcut ingredients to keep them easy to prepare. I don’t offer nutritional advice—instead, I ask you what you enjoy eating, your dietary restrictions, and your functional capacity so I can tailor recipes to your needs. My goal is to spark joy in food for those living with disabilities. I also share food safety tips about potential food allergens and foodborne illness. The WHO estimates that 600 million people worldwide fall ill with foodborne illness each year. These types of illnesses can be much harder to endure if you are a person living with disabilities. I’ve had to confront my own internalized ableism, and I’m still learning every day. I’m proud to support a community that has given me so much.

Society Beauty standards People don't associate disability with beauty/sexiness. But my question is...WHY? Why can't you be in a wheelchair or have any sort of disability and not still be considered sexy and beautiful? True beauty is in the heart, mind and true confidence within will ALWAYS radiate right through and knowing you have so much more to offer regardless of looks or disability. There's more to a person than just looks. Looks are only a part of what makes you who you are. Who you are deep down, is what matters. My aim is to change the world's perspective on disability and show that you can still have AMAZING hair, makeup, nails and EVEN figure!! Be in a wheelchair and still slay regardless of wheels.

Different doesn’t mean less happy My life perspective completely flipped the day my baby girl had her first ear surgery. A little bit of our back story, Camilla had recently been discharged from the NICU after a 118-day long stay. During an in-home visit with a vision specialist, we found out Camilla was blind. We knew something was off with her eyes, but blind?!?! How??? So many other things were going wrong in her little body, how could her eyes be failing her too? I felt like God had no mercy on our family and that we couldn't catch a very well-deserved break. My heart was shattered that day. Fast forward to surgery day, I was sitting in an incredibly stuffy waiting room where time seemed to creep by at an impressively slow speed. My sedated Camilla was down a distant sterile hallway surrounded by a medical team determined to figure out why she couldn't hear. Today was the day I'd find out if my baby was blind AND deaf. I felt like the world was falling apart in slow motion. I went up to a different part of the hospital that was usually empty to spend the next several hours of my waiting time. A few moments later, a dad and his blind son sat next to me. I felt frozen in time like their existence was a preview of my reality. It was agonizing. But then something amazing happened. The blind boy listened to IV poles rolling by and asked his dad to explain what was going on. A sickly man, who looked like he was wasting away and waiting to die, lowered his head as the dad explained "Someone is walking by and it looks like he has cancer". Without hesitation, the blind boy leaped to his feet. He enthusiastically began to jump, clap, and cheer for a brave stranger fighting death. The man's eyes brightened, his mouth found its long-lost smile, and he stood a little taller. As I watched this blind boy create happiness and hope out of thin air, I realized something, there is joy to be found in a life that is different. Yes, my life will have its challenges, but it will also have its magic. I am a lucky lucky mom❤️‍🩹

Learning disabilities I was told by the school, “Read to him more; you are not reading to him enough.” I felt like I was failing my son as a mother because he was 6 years old and could not read a single word. He was acting out in school, and I was receiving daily messages about his disruptive behavior. As school progressed and became harder, he often would come home crying, saying, “What is wrong with me? Why can't I read like my friends.” He would throw books across the room when I tried to read to him, saying he hated reading. I cried myself to sleep every night as I could see how much he was suffering, and I felt helpless as his mother. Often he would come home from school exhausted and would curl up on the couch with his emotional support dog and fall to sleep. I advocated for the school to test him for learning disabilities, and the diagnosis came back - dyslexia. I knew nothing about dyslexia, but I knew this was why he was not learning to read and also why he felt so frustrated and angry. I realized that dyslexia is a learning disability that is most commonly associated with problems reading and is the most common learning disability affecting nearly 10% of the population. Sadly, often, children will go undiagnosed for years, leading to increasing problems in school along with depression and anxiety. Even though he was provided an Individualized Education Program (IEP) in school, he still could not read a single word in 2nd grade, and his acting-out behaviors were becoming worse. Children with dyslexia often need an evidence-based reading program to read, but sadly, our school systems do not have the staff or the appropriate training to provide such reading programs. I soon realized if he was going to learn to read, I was going to have to take him to dyslexia-specific tutoring. We live in Reno, NV, so there were very few in-person options, so I contacted Lindamood-Bell Learning Processes In Sacramento, CA. They identified that he was not even reading at a kindergarten level and recommended intensive daily tutoring. Within weeks of their instruction, he read words and even put together sentences. I still remember the first time I heard him read to the instructor. I went into my bedroom and cried as I no longer felt helpless. As he started to learn to read, I noticed that his problem behaviors in school were decreasing simultaneously. He was very motivated to learn to read, and he said his goal was one day to be able to read to his emotional support dog, Sammy, who also has his own unique needs. I can happily say by the end of the tutoring, he was reading to Sammy, and the transformation was short of a miracle. I felt like I had my son back. I wish I could say tutoring was available to all children with dyslexia, but that is not the reality. Often, parents like me are faced with the challenge of paying for tutoring, but what if you can't afford it? As a result, the research shows dyslexic students are more likely to drop out of school and develop psychological problems as compared to their non-dyslexic peers. Further, it has been reported that 85% of prison inmates (coalition for literacy) are dyslexic. I did not want my son to turn into one of these statistics. He still has days when he comes home frustrated, and Sammy always waits for him. He will likely need additional tutoring in the future, but as a single mom, I will have to figure out how to afford it financially. All I can remind him is that he does have dyslexia, but it does not define him and that together, we will continue to find our own ramps to help him excel in life with his dyslexia. Sammy included.