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living with Ehlers-Danlos Syndrome If doctors said you were dying from a life-threatening infection and you survived, how hard would you fight to keep living? If doctors told you it was a miracle that you survived childhood, how hard would you fight to be seen and heard as an adult? If a nurse told you that you were slowly slipping away, how hard would you fight? Welcome! My name is May Enos. I am 25 years old living with Ehlers-Danlos Syndrome, Gastroparesis, Dysautonomia, Immunodeficiency, autoimmune disease, Kyphosis, and so much more, and I am a medical trailblazer fighting for my life. . This means that my body has faulty or missing collagen- with the inability to build strong collagen (the glue that holds the body together) essentially my body is falling apart. I have been told it’s only a matter of time before I become paralyzed due to spinal instability, but that is not what scares me. I’m not sure much of anything scares me now since I have been slowly starving to death, being unable to get adequate nutrition. My stomach is paralyzed, and oral nutrition causes serious allergic-like symptoms, though test after test has revealed no true food allergy, I continue to react to everything orally. Treatment has been no better. Still I hope. Illness may take my ability to eat, see, speak, or walk as it has been, but I find it hard to let go of the concept that my life has a purpose and a mission. So, I will fight, and I will trust that things will work out even when things feel completely hopeless. A doctor recently told my Mom it was a miracle that I survived childhood and compared my case to a lot of his NICU patients who did not fair very well, yet I look normal and healthy. You wouldn’t know anything is wrong or different about me just by looking unless you see my feet fall to the side due to hypotonia, my inability to maintain eye contact, the feeding tube I am hooked up to 12 hours a day, the braces I wear to hold my joints in place, or the wheelchair I am sitting in. You just don’t see the nausea, debilitating pain, silent seizures or countless other symptoms. Never Give up Being the first in my family to be diagnosed with Ehlers-Danlos Syndrome has been a challenge to say the least. Someone once asked me if I blame my parents or hate God for allowing me to go through this pain, but I couldn’t hate the people who have always loved me and supported me through it all. Even when my parents have no idea how to help me, even when they had no idea who to turn to or that anything was seriously wrong, they were and always have been there for me. In many ways I am a medical trailblazer in my family and it’s been challenging but I’m realizing something is not right with my genes and this is something I desperately seek answers for. This is a cause I will continue to fight for. Maybe my loved ones will never want to know what I go through, or what is making me so sick, but if they do I’ll hopefully have better answers for them someday. I am extremely grateful for the days I can see, speak, and walk because even these are taken from me at times as a disabled- occasionally mute, visually impaired, feeding tube dependent, ambulatory wheelchair user. I know life can be difficult and that most people wouldn’t understand the struggles we go through, but I also know that our smiles, laughter, and personalities can still brighten the world even if we struggle beyond measure. Keep fighting and hang in there because we are all needed in this big world, even if someone tells you otherwise. I hope that by sharing my story I can offer hope to others going through what I am going through. I hope that by sharing my story I can offer hope to those experiencing complex medical issues, who are being told “I can’t help you” by medical professionals and are being judged or bullied by others. You still matter, even when it feels like your life is pointless, I am here to say, “you matter. Your life matters, and your story deserves to be heard. Please, don’t give up.”

Physically challenged My name is Nwabisa Mthambeka from Matatiele. I'm currently studying in the University of Kwazulu Natal in Durban. I had an accident in 2007 December and it was the most difficult time of my life because I ended up losing my leg. My wish is to be a motivational speaker and help out people who are struggling with depression and accepting themselves.

How Burrmaid was Born My name is Burrmaid and I am a 25 year old kid, artist, videogame streamer and incomplete T12 paraplegic. 3 years ago, when I was 22, I was the passenger in the backseat of a vehicle which hit a pole going 80+km/h. The driver, my friend, experienced a psychotic break after smoking marijuana for the 2nd time. It was a rainy night and we missed the turn off to the place we were supposed to go to chill. I informed the driver and this triggered him to start accelerating, pedal to the metal, until we hit something. The last thing I remember is the other passenger and I yelling for him to slow down. I woke in the hospital surrounded by my friends. The doctor asked me if I could feel "this", poking different parts of my body and I knew something irreperable had happened. I had suffered a burst fracture to my L4 and L5 vertebrae. The other 2 people in the vehicle were also injured (driver: broken foot, other passenger: hit his head so badly half of his skull bruised). I have always had an air of stoicism; I've put myself in a lot of bad situations prior to this and this wasn't my first hardship. I knew from that moment waking up that I would just have to deal with this, panicking wouldn't help the situation. The accident made me realized how loved I am and showed me true friendship. My friends would visit me day in and day out, travelled across the country to see me and send me gifts. Conversely, some of my closest friends abandoned me after the accident for their own reasons. My injury could have been much worse; I am very lucky that I have the mobility and feeling I have today. I use a wheelchair for the most part but am able to walk short distances with leg braces and forearm crutches. Since the accident, I have dedicated my time to streaming video games for a small audience. I always had a hard time making friends growing up but craved relationships with people. Streaming has helped me immensely to build social relationships where I am often stuck inside due to my disability. I have loved gaming since I was a kid and streaming has helped me become a more confident person, a better gamer and friend. It lets me express myself through the medium I prefer most, the computer, while meeting new people everyday. My stream is at www.twitch.tv/burrmaid where I often play a variety of games and listen to a variety of music (seriously, it's a huge range).

My Personal quadriplegic Story Hi, I'm Jana. I'm 18 years old from Germany. One year ago I had a vaulting accident & broke my neck in two spots. Since then I am a quadraplegic, which means I can't move my fingers nor my legs. However, I still love, visit & ride horses. Horses and vaulting are my life- I cant live without. It is possible to fullfil all your dreams and goals.

העולם על פי ארז היי, שמי אסף. יש לי אח מיוחד מאד ושמו ארז. אתם בטח מכירים אותו ״כילד עם הנקודות״. ארז שמאד אוהב לצפות בסרטונים ביוטיוב, ביקש ממני לפתוח לו ערוץ ביוטיוב. אני ממש התלהבתי ועזרתי לו לשכנע את ההורים. אני חושב שככה אנשים יכולים להכיר אותו ולהתרשם שלמרות הקשיים שלו הוא ילד שמח ומאד מצחיק. אנחנו מצלמים פעם בשבוע ואני עורך את הסרטונים ביחד איתו. התהליך מאד כיפי, אנחנו צוחקים הרבה וזה הרווח הכי גדול שלנו יחד. אני מזמין אתכם להצטרף אלינו ב Erez Gaons Special World About the blog Hi, my name Asaf, and I have a brother named Erez who has special needs. Erez loves to look at YouTube blogs and play with his iPad. When he asked me to create a blog of his own, I immediately opened one for him on YouTube called "Erez Gaon's Special World." This is where we share his happiness and daily activities showing that although he has a rare disease and disability, he is a smart, funny and a happy boy. We have both learned a lot doing these clips together.

Samineh I am Samine. I'm from Iran. I was born with a disability and I use a wheelchair. I'm currently a student of cultural affairs management. I love mountains and climbing. It's been five years now that I climb with knee pads and rods. Climbing is the most joyful thing for me and it calms me. Despite all the difficulties that disabled people have in Iran, I love to see the progress and I'm doing my best to succeed. Some of the things that I like are: travel, calligraphy, painting and singing. I like to travel the world and if I get the chance, I will go on a trip alone. I sometimes do calligraphy at home, but I can't sing in Iran. I know that one day I will do everything. I believe that life is worth living. However, sometimes life does not go how we want. Despite my disability, I always live with great enthusiasm and pleasure and I enjoy the things I do. I know one day I will experience all everything that I enjoy because I believe life is not always the same, so there is always a chance.

Early life with Spinal Muscular Atrophy Type 2 My Name is Shelby Lynch and I am 21 years old, and I am a fashion and beauty influencer with a muscle wasting condition called Spinal Muscular Atrophy Type 2. SMA causes weakness in my muscles as I get older and also affects my breathing which is why I am on a ventilator 24/7. I have been interested in fashion since the age of 13/14 when my granny used to take me shopping and let me choose my own clothes. This is when I started to have my own sense of style and it has developed from there. I started my Youtube channel when I was 17 doing the odd video here and there, but then I decided to create things I enjoyed watching like haul videos and get ready with me. From then on I started vlogging and speaking about my disability. I started vlogging going out with my friends, going to concerts and festivals and going away to London. Towards the end of 2016, I started taking my Instagram more seriously and making it aesthetically pleasing, while incorporating fashion beauty and lifestyle pictures. Featured on Missguided In October 2017 I noticed that Missguided had started a campaign where they were posting pictures and videos of people who weren't the stereotypical idea of perfect. I decided to show my appreciation for the campaign by posting my own Instagram picture in a new Missguided hoodie I had purchased explaining that disabled people aren't often seen or described as sexy or beautiful which isn't the case. When I posted it I honestly didn't think anything of it. It wasn't until I checked my laptop in the evening that my picture had received so many likes that I thought something must have happened. I sat there for a few seconds really confused and then I thought I should check Missguided's Instagram page... and they had reposted my picture! They sent me clothes to wear on my Instagram and asked me to be part of their campaign where I did a video for them where I spoke about confidence and body image which was released in January this year. Spinal Muscular Atrophy Type 2. Since then I have had so many great opportunities such as writing blog posts for different charities and writing an article for Cosmopolitan! I have got some exciting things coming up soon that I can't wait to do and see where it goes!

Antonis Tsapatakis My name is Antonis Tsapatakis (@tsapatakis_a). I'm 29 years old and I'm from Chania, Crete in Greece. I was paralyzed in a motorbike accident in December 2006. In 2008 I started swimming again, since I was a swimmer and a water polo player since I was 5 years old. In 2009 I earned my first European silver metal in the 100m breaststroke, starting an upward trend in the sport of swimming again. In 2012 I was crowned fourth Paralympic in Paralympics games in London 2012 over 100 m breaststroke. In 2013 I conquered two bronze medals at the world championship in Canada over 100 m breaststroke and 200m medley. In 2015 I conquered the silver medal over 100 m breaststroke at the world championship Glasgow where I won also the nationwide and European record in this event. In 2016 I participated in the Rio Paralympic games where I conquered fourth place. This time, I'm prepared for the next Paralympic games in Tokyo 2020, where I hope to achieve my goal and conquer the gold medal.

Featuring scars, fitness, body confidence, self-love & the journey We’re two California girls who have bonded over some badass surgeries. ​We became friends in high school, both active and athletic in our own ways. Kate was a talented ballerina and Molly dominated in volleyball, basketball, and soccer. During our college years, we reconnected when we both underwent traumatic surgeries within the same year. While Molly was recovering from her car accident, Kate reached out and sent her a picture of the back brace she was bound to after her final spine surgery. We bonded all over again, knowing that in many ways, we now shared an experience that no one else in our lives had quite shared in the same way. Both of us, respected athletes in our disciplines, feeling disabled and powerless; uncertain of what the future held for us. Would we ever be the same again? Was our talent taken from us? Fast forward to today: we are not only recovered from our surgeries, we are thriving. (Read our personal stories of resurgence on our website) With this project, this movement, this community... we have decided that it is time for not only our stories to be heard, but all of your stories as well: The stories of athletic people embodying human resilience. Help us inspire those about to undergo surgery, or who have undergone surgery and are asking themselves the same questions we all grappled with during our periods of uncertainty. Help us inspire those with scars who view their wounds as painful reminders instead of emblems of survival. Help us get the message out that there IS life after surgery. www.lifeaftersurgeryproject.com

A Quick Introduction Hi there, my name is Morgan. I am twenty-four years old, I live in sub-tropical Queensland, Australia. I happen to have a few disabilities which make my life a little more challenging than the average person. My Traumatic Entry into the World My entry into the world was quite traumatic for both my parents and me. I should have been in my Mum’s tummy for forty-weeks, but at twenty-eight-weeks, my Mum had severe complications with the pregnancy - Placental Abruption, and I had to be delivered in an emergency. I suffered from the loss of oxygen as the umbilical cord was wrapped around my throat. The doctors and nurses at the hospital thought I was Indigenous because my skin colour was black from bruising. As a result of the prematurity, I spent a lot of time in Neonatal Intensive care. Mum and I were very sick, and we are both fortunate to be alive. I spent four months in the hospital and had many procedures including Neurosurgery for an Intraventricular Haemorrhage which led to Hydrocephalus. The surgeons had to equip me with a Ventricular Peritoneal Shunt to relieve the increased pressure inside my brain which consequently blocked eight times over the first four years of my life. My Diagnosis Over the first few years of my life, I spent a lot of time in and out of the hospital for various problems and many appointments with specialists. As a result of this, I was diagnosed with Hydrocephalus, mild to moderate Autism, Intellectual Disability, Cerebral Palsy - Spastic Diplegia, Epilepsy, and Legally Blind. I can crawl, and I can walk very short distances if someone holds both of my hands, but I usually get around in a manual wheelchair. Travel is my Passion Travel is right up there as one of my favourite things. I have travelled many times throughout Australia but going to Indonesia was something else! I love meeting and talking to new people. It’s hard work for my parents pushing me around rough terrain in my wheelchair, but I think it’s worth the effort for all of us to see and do as much as we can, it makes us all happy! I can’t wait to explore more of the world. Like to Read More? Along with my parents, Daniel and Jodi, we spend lots of time working on our blog – rollinadventures.com I hope you enjoy reading as we share our wheelchair travel stories and life’s challenges.

My amputee story If you would have asked me 4 years ago where I thought my life would be today, I would have never guessed here.(@tracy_ann920) How one small workout injury, a peroneal tendon tear, could lead to the loss of my leg. Contaminated hardware, 22 surgeries, osteomyelitis, sepsis and 8 picc lines later, I had to make the decision whether to keep my leg and risk losing my life, or amputation. Being a divorced, single mother to 4 young children, the choice was an easy one. I had to survive and beat this for them. They had already seen me suffer through so much and it was starting to take a toll on them. I suffered from depression and med addiction due to the pain control. Despite the fact I could barely eat most days, I gained 60 pounds from being on bedrest for 2 plus years. I could barely make it to my bathroom without losing my breath. Crazy thoughts ran through my mind. Would I remember how to walk? Would I ever find someone who could love me now with a part of my body missing? Would I ever wake up in the morning and feel normal again? The day before my amputation, I stood in my bathroom looking in the mirror at a person I didn't recognize. This girl who had been in the best shape of her life, who used to be full of energy, was gone. I cried alone, thinking how in less than 24 hours, my life would change forever. Life after becoming an amputee After my amputation, it was still a bit of a struggle. I developed the same staph infection in my stump that led to the osteomyelitis which caused my amputation. It was challenging to say the least as I continued with more surgeries. It prolonged my being able to get a prosthetic and learning to walk again that much longer. My first instinct was to withdrawal, hide out. Never leave the house. However, with 4 kids that was next to impossible and I still continued to push on. Had this infection not cleared up, the next phase would have been to amputate higher, above the knee. Miraculously, I finally got through this challenge and I felt as if my life was ready to begin again. I decided that it was time to change everything. My children were looking up to me to be there for them. What kind of example would I have been had I given up or let this take over my life? I wanted to teach them that no matter how hard our lives can be, whatever we are faced with, we can survive. I wanted to inspire others who were facing similar situations and adversity to not give up. Too many times to count, I had felt like I wanted to throw in the towel. There were times in the hospital that I felt like I was truly going to die. In the back of my mind I would picture my kids and how their lives would be if I wasn’t here. I had to fight. I had to push harder for them. God had blessed me with these 4 amazing children and I refused to let this take me away from them. Thankful for life Here I am today, 4 years from my initial injury, 2 years since my amputation. Still going strong. Not quite where I was before but I am getting there. I am walking, I am back to running and working out. I am running my first 5K in years here on Thanksgiving. It’s going to be an emotional moment for me when I cross that finish line. Something I thought I would never do again. I am so thankful for God, my faith, my children, and some pretty amazing friends of mine who have helped me get back to where I am today. Loving my life now The one thing I have learned throughout this journey is to not take things for granted. Something as simple as walking. We do it everyday not thinking twice about it until its gone. Appreciate everything you have. Enjoy the beauty in the world. Live our lives to its fullest. Have fun. Take risks. Stay humble and be kind. Treat others the way we would want to be treated ourselves. I’ve learned how to love differently. How to be a better person, mother, and friend. I may be missing a part of my body, but my heart is now whole. I am proud of the woman I have become. I hope that I can inspire others not to give up. We have so much to fight for and so many reasons to live on. ~Live Well-Laugh Often-Love Much~

What is Halloween to someone who is visually impaired? I LOVE Halloween! It isn't my favorite holiday, but I love it because you get to dress up. Who doesn't love being a princess, scarecrow, Dorothy from Wizard of Oz, or even Tigger from Winnie the Pooh? (Winne was my favorite costume ever!) Kids wander around on their own to gather candy from strangers for free! Wait... has anyone ever thought of how sketchy that really is? HALLOWEEN IS SO DANGEROUS! Especially if you're legally blind. Struggles I had with Trick-or-Treating being Legally Blind Let's be honest, not being able to see in general sucks. Now let me go running around in the dark in a costume and practically a snowsuit because I live in Canada and it's SO cold usually snowing. Halloween isn't exactly the most accessible activity when it comes to being visually impaired, but I made it work. I always went down my street for trick-or-treating with a bunch of friends from school, usually, some adults would come with us as well. I would walk up to the door with my friends and it was overall a success. I think the hardest part is actually sorting through my candy afterward trying to figure out what everything was. Sometimes I'd just rip the candy open and eat it if I really didn't know. My Biggest Scare on Halloween I was the most scared on Halloween when I walked up to a neighbor's house and my friends told me that it looked like there was a man sitting in a chair, but you couldn't tell if it was a real person or a decoration. My friends proceeded to walk right by and tell me that it was fake. I continued to follow them. I didn't actually see this person in the chair because it was dark. As I walked by the figure & the man jumped out at me and I screamed, which caused me to go screaming and running down the driveway. Loud sudden noises scare visually impaired people the most. Now I can laugh, but at the moment I thought I was about to die. Family Traditions on Halloween One of my family's favorite traditions is that every year our friends come over and we make an effort to try and scare them. After about 10 years of doing it now, everyone knows what's coming, but we all get a good laugh every time. The best time was when my dad threw a giant monkey off of the roof onto our beloved guests while they were standing at the door. Did I mention that the monkey was also wearing my dad's underpants? Halloween will always hold a special place in my heart of lifelong memories. Check out this super cool YouTube video about a guy who is an amputee and makes fun Halloween costumes out of it! (Josh Sundquist)