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About me... Twenty years ago, on March 25, 1996, I became a quadriplegic. While I obviously don’t celebrate that life-changing moment, I DO celebrate every day, month and year after it. Because each one, each new morning, represents another checkmark on the “Never Give Up” scoreboard. World Champion Quadriplegic Surfer I was one of the top junior surfers in the world, a month away from turning pro, when I pulled inside a barrel and got thrown headfirst into a sandbar. The impact broke my sixth vertebrae and I instantly became a quadriplegic. The good news is ... my story didn't end that day in the ocean. With the help of the surf community, I got back into the sport I loved, and in September 2015, I became the world champion of adaptive surfing. Motivational Speaker In the years after my accident, I came to realize that my story was important to share. So I got into motivational speaking. (I bet you already figured out my story really isn't about surfing or paralysis. It's about life – and living it in a big way!) I speak to all audiences – students, athletes, executives – but I particularly enjoy talking to kids at schools. The photo here is me at an elementary school with a little shredder who participated in my Life Rolls On "They Will Skate Again" event in Venice CA. What a small world! Just remember this ... your power is in your perspective, not your circumstance. No matter what you're going through, I'm here to tell you, you got this. credit: http://jessebillauer.com/meet-jesse/

Believe in yourself Hello! My name is Ayça Şahin, I'm from Istanbul, Turkey and I'm 21 years old. My brother and I were diagnosed with Spinal Muscular Atrophy (SMA) in 2004. I was just 7 and he was just 2. We were children facing these difficulties in life. SMA is a genetic, neurodegenerative disease that causes atrophy and eventually leads us to the loss of abilities, such as walking, standing up, climbing stairs, raising your arms, and even breathing in some cases. When we were diagnosed, there was no treatment but our parents kept us strong and hopeful. The disease is progressive. My brother has been using a wheelchair for approximately 6 years. I cannot stand up from the ground and standing up from the chair is really difficult. I cannot use the stairs and I get tired when I walk. While SMA steals a lot, I managed to win in my life, and I have never given up. I have grown up among many with diseases. I saw lots of patients at hospitals and physiotherapy centers. We have waited for medicine for years, thus I know how people wait for treatment and hope. That's why I decided to study genetics. I want to find treatments for incurable diseases and I want to give people hope. FDA approved the first treatment for SMA named Spinraza (Nusinersen) in December 2016. Turkey has now approved Spinraza for SMA Type 2 and Type 3 patients (it was approved for SMA Type 1 patients in summer 2017.) I am a warrior, I am an SMA patient, I am a future geneticist, a future scientist. With Nusinersen, the progression of SMA will cease and I will walk more freely, I will regain some abilities. My brother can walk again! Surely, we need time for improvements. Time was our enemy when there was no treatment for SMA. But now time will be our friend. We will be stronger with Nusinersen. I promise to be the hope of patients. I will never work for money. Money will never enslave me. I will work for people. My enthusiasm will be the hope since my motto is "Dum Spiro Spero", which means "while I breathe I hope." Believe in yourself, be hopeful, and never give up. This way, there is no way to you fail. Always remember, the best days are yet to come.

Hi I am Luke. I was born with Sacral Agenesis and caudal regression syndrome, which means the lower part of my spine was missing from birth. But that didn't stop my from racing in the 4 cylinder class at the speedway. With modified hand controls, I am now NSW number 2 and I am working towards the Australian title this coming season. I hope to be an inspiration to everyone around me and try to keep a positive attitude towards every aspect of life.

My name is Ellie, I'm 16 years old. I have a genetic connective tissue disease called Ehlers Danlos Syndrome. This disease affects my entire body and causes many co-morbid conditions including dysautonomia. EDS (in my case) causes daily, constant pain, legal blindness, frequent dislocations and subluxations, many food allergies and intolerances. Every day is a struggle. But I have learned to truly live despite these struggles. I have learned to turn such a dark and difficult thing as incurable disease into something great. You see, I believe that the hardest parts of life can be the most empowering. Because of my fight I have been able to create an initiative that sets my soul on fire, called The Superhero Project. We are dedicated to empowering the fights of others and inspiring the superhero within us all. We send free, handmade Superpower Bracelets worldwide to those fighting all kinds of battles. In the end, I am actually grateful for my illness because of the lessons it has taught me; such as using my voice which I now use for motivational speaking, making the most of every single moment, and how powerful something as seemingly simple as kindness and love can be.

Disabled. That’s what I am (officially). I was born without a left hand, so I get called disabled. It’s not that I feel like that! Anything but really. When I think about myself, I think of a girl with blonde hair who has a passion for volleyball, fashion, and so much more. But when I look around me, I realize that I really am different. I notice it most when it gets summertime. My missing hand is no longer covered in layers and layers of fabric and a big fluffy winter coat. In a top without sleeves you can see everything, including my missing hand. And all of a sudden I realize how different I am. People start looking at me again. Some look carefully (and quickly look away once they see that I see ;p), others just gaze without any sign of embarrassment. In some weird way I get it. I mean, I AM different, so of course people look. In general baby’s get born with two hands… Being different is still weird... But still, I’m sad about it. It’s sad that apparently we’re so not used to seeing something different, that we look when someones missing a hand, or sits in a wheelchair, or whatever else there is different about a person. I wish it would be normal to be different. Because really… No one is the same right? Aren’t we all different? And don’t we all want to be different from the crowd? We all try so hard to be! I think this happened because of the media. There’s a certain image we see in movies, series, books, magazines and online. For a long time I thought that there were no disabled people in history, for all I saw in my history books and in history movies and series were perfect, pretty white girls. When I thought about princesses living in castles I never once thought about one without her left hand, or in a wheelchair. Why? Well, have you ever seen one in a book or movie? So then... is it weird that I thought this way? Of course this issue goes way deeper. I never see disabled models in the fashion industry, which is weird, because I know for sure that there are plenty who love fashion. I also know that there are a lot more women that feel excluded, different. Colored women have been battling for their spot in the fashionworld for years, and so have ‘plus-size’ models. We need change so we can be normal! As long as disabled, 'different' people wont have a place in the media, I’m not feeling normal enough. Even with my husband, and my little house, and my ordinary job… I don’t feel normal enough. People still stare, and they still ask weird questions… So until the day that I really can be disabled and normal, I will fight for disabled people to get their rightful place in the spotlight.

The road traffic accident that changed my life…but not for the worst! I was involved in a road traffic accident in 2009. I suffered a T12/L1 incomplete spinal cord injury. I went from being on top of the world, having just graduated from university with a first class honours degree in economics with the job of my dreams lined up, to being told I would never walk again at the age of 22. My world was crushed, but my inner fire and will power wouldn't let me accept defeat. How I Found Fitness After My Spinal Cord Injury Through my hard word and determination, I managed to get back up on my feet. Once I did, there was no stopping me. Even though I needed aids to mobilize, the gym became my new best friend. Now I am so passionate about working out, that it spurred me to become a qualified personal trainer. I love to waterski, hand cycle and climb mountains where the conditions permit me to. The bottom line is, no one can ever stop you from achieving your goals and dreams in life. Sure we all have obstacles, but surpassing them is what makes people champions in life. I am happy to say that today, I am probably the fittest I have ever been ironically, a qualified personal trainer, a business owner and a keen adventurer/traveller amongst an array of other things! #impossibleisnothing #spinalcordinjury #workhard Follow Swati on her fitness journey on Instagram: @swot_squats

Life with an illness that nobody can see... My name is Kellie, I'm a vivacious Scorpio from Queensland Australia who enjoys dancing & long days at the beach... oh yeah, & I was told that my incurable & dibilitating chronic illness was just a bad period. How Endometriosis Affects Me When I was 19 I remember screaming in pain as though I was in labour. I’d never felt anything like it, & hoped I'd never have to ever again. Unfortunately I wasn’t that lucky, & it became a regular occurrence. I was continually told it was just a bad period, or just my body adapting to the pill ...9 years of misdiagnosis later I found out it was actually Endometriosis. The Truth About Endometriosis Endo effects my life in some way every single day. I can go from being perfectly fine to needing to call an ambulance to get me off the floor in the space of an hour. Endo is unpredictable, it’s emotionally, physically & mentally exhausting & I wouldn’t wish it upon my worst enemy. I try not to let it rule my life, but it’s a constant struggle when every piece of food I put in my mouth, what clothes I’m going to wear for the day, whether I can go to dance class or out with friends, or basically do anything spontaneous that most people wouldn’t think twice about... all depends on how bad my endo is that day. Living with an invisible illness is an endless battle against society because you’re continually told “oh but you don’t look sick”. People often underestimate you because they see you working, dancing, socialising, exercising, holidaying, smiling, laughing & living... but they don’t see the paralysing cramps, chronic fatigue, anxiety, stress, tears, bowel & bladder complications, vomiting on the side of the road, crying on the shower floor, extreme bloating, blood clots, ruptured cysts, anxiety about conceiving, miscaraigaes, relationship stress, back pain, cramping organs, ambulance rides, hospital stays, invasive medical procedures, medical bills, burns from heat packs, or scars from surguries. Dealing with a chronic illness that has no cure & that will effect you for the rest of your life is difficult enough, let alone people constantly questioning if you’re even really sick. My Future with Endometriosis I don’t know what endo will mean for my future, but I hope to play a part in helping change the way society views invisible illness & women’s reproductive health. I will keep sharing my story in the hope that it will encourage someone else to share theirs, & that it will continue to have a carry on effect. The more we talk about endo the more chance we have of it becoming accepted instead of something “too taboo” to talk about. Women being in pain to the point where it effects their ability to carry out simple day to day tasks isn’t “normal”, & I’ll do everything in my power help to break that stigma.

The Story of Tina Hurley: Below-Knee Amputee Hi, I'm Tina Hurley (@Tinah214). I am a 33 year old former gymnast and Division 1 competitive cheerleading athlete. 4 years ago I was diagnosed with a rare blood vessel condition in my legs called Popliteal Artery Entrapment Syndrome after it became increasingly difficult for me to walk and use my calve muscles without pain. Over the past few years, I have had multiple surgeries including muscle debulking, multiple artery bypass grafting, and endovascular artery interventions which were all unsuccessful at getting blood flow to my left leg. In July 2016, after things got critical and all surgeries had failed, I underwent a left below-knee amputation to regain some quality of life. I suffered a complicated post-operative course resulting in a large wound requiring significant wound care for 8 months prior to a revision amputation in March 2017. I again had wound issues and my residual limb anatomy did not allow for prosthetic progression. Just 3 months ago I had another amputation revision, which has gone well and will, after 13 surgeries, hopefully have been the last of the left leg surgical saga. My right leg is next up on the docket once the left leg stabilizes further. Despite the unfortunate nature of medical status, I truly have never been happier or more fufilled. Heading into my future I realize, the more leg they take from me, the more heart I gain. You see, I have gained far more than I've lost... which is quite a statement given the concomitant loss of my marriage, house and dogs after my first amputation. Over the past year, I have taken up adaptive Crossfit and qualified for one of the largest international competitions in the world (@wodapaloozafitnessfestival) that I placed 2nd at in Miami, Florida just 3 weeks ago. As I sit here writing this bio, I am in Switzerland after being invited to tour Europe with the US paralympic bobsled team. While racing down the ice in the bobseld yesterday while the Swiss Alps opened up in front of me I was overwhelmed with a sense of accomplishment and pride in my ability to perservere. A year ago today I feared my future and was unsure how to survive with my set of circumstances. Now I realize I cannot only survive, but thrive while secondarily inspiring others by simply living my best life despite my challenges. I've lived through repeated trauma, tremendous loss, and core shattering pain... but this is not my story. My story is one of adaptation, enhancement and the pursuit of inner happiness. It is a story about the realization that life is not about finishing with 10 fingers or 10 toes; it is about developing inner constancy, building virtue in yourself, and being of service to the world. I have chosen to be a product of my decisions not a result of my circumstances through seizing moments, creating memories, connecting to my community, traveling, submerging in enriching activities and soul searching via introspection and periodic honest self confrontration to further build my character. I have never loved myself this much and have never found myself surrounded by such amazing people as door after door swings open to greet me with unforseen opportunity. Our futures are all uncertain but, by keeping a positive outlook, finding silver linings, maintaining a can-do attitude and becoming adept at adapting, we can create a life without limitations. In honoring the following, we can live our best lives: love yourself, love each other, dream big and never give up!

The Effect of Discrimination on People with Disabilities Tonight, at almost 22 with a life- long disability, I have a little bit of a broken heart. A broken heart in a way many can’t understand. A heartache that I wish on no one. A heartache that takes a lot of strength to overcome constantly; most of the time as I work hard to not let others see. I have experienced many forms of discrimination with a lack of remorse or understanding in my life, and unfortunately, it doesn’t, at all, get any easier to deal with. It shouldn’t. I was headed to PanIQ Escape Room DC to celebrate an occasion with my family. We couldn’t find the building, so we called to find the location. When the person on the phone described the location we realized there were stairs to the main entrance, so we asked where the entrance was for people in wheelchairs. The response was simply, “ there isn’t one”. There also wasn’t an apology, refund, or any form of accommodation (that allowed me to participate) made. I have many issues with this. If I CHOOSE to I am a person that can participate in anything anyone else can. I have that right. It should be given REGARDLESS of my difference or difficulty I COULD cause the business. Here’s the thing, anyone could cause the business difficulty or a difference. It doesn’t matter how a person seems to act or look. Who is to judge if I can or can’t be a part of or in business because of my physical difference? Next, I can’t tell you the pain I felt as I sat on the sidewalk being told my family couldn’t participate in this experience. We all had to miss out on what should’ve been a great experience simply because of the fact that I use a chair. I’m grateful for such a supportive family, but we all know it’s unfair and heartbreaking for all of us. My heart especially broke for the person I was there to celebrate. They shouldn’t have to give up an experience with me because of a situation like this. Lastly, many people tell me I’m so inspirational for how I handle and get through things as if I have it all together. I can’t tell you how many times I’ve been angry and questioned my sense of independence because of ignorance such as tonight. Will I have to question if I’m welcome to participate in an establishment every time I want to go somewhere? What makes me so different that I can’t have the same rights as everyone else without a fight? These questions are unfair, but unfortunately, important to ask and assume. Maybe things are like this, so there can be an advocate for change. YOU are valuable and worthy. YOU deserve equality for being exactly as you are. WE will work to make that happen. As I sit here thinking of the situation I experienced, and the next course of action I want to take, I hope it’s known that even with the amount of disrespect I experienced, it is not my goal to bad mouth this company. I have no desire to ever go back, and bad mouthing the company will only hurt me even more in the end. The reason I share my feelings on the subject is to make a difference for younger generations and myself in similar situations. I use my situation as a hopeful wake up call for this world. If places don’t have the capability to welcome and support the desires of people with disabilities as they would anyone else, we need to work together to find solutions. I do what I do so that this heartache and fear of acceptance NEVER happens to those younger than me. Many of us struggle personally with seeming different than other people as it is. It takes a lot of guts sometimes to make a difference or try again with something new that’s based around the subject of a disability, especially with people in society that are less than understanding. My heart just hurts right now. Not simply because of a “ why me” situation, but really an indescribable frustration that someone else in this world could or has experienced the same hurt I have in more ways than one. I know the only way to “ fix” these emotions is to do something and continue through the situation no matter how hard it may be some days. It’s funny, a few weeks ago, I wrote a paper with the thesis of “ our hardest battles often turn out to be our best callings in life.” When thinking about it, I thought my hardest battles were meant to be typical. They might’ve been my journey through multiple surgeries, college, family loss, or dealing with the symptoms of my condition. I never really imagined the subjects of discrimination or what makes me stand out as being a part of my hopeful career path. It all reminds me that we have a circumstance that is unique enough resulting in our own special impact. Our actions affect the future. Take it a day at a time and make a difference in the way you were made to. Lastly, remember to support one another. Thank you to everyone for your support in all of this. I know and appreciate that I’m loved by so many of you. Stay tuned for the work I will be doing. I promise I will work my hardest to make it worth it.

EDS: Every Day a Surprise. How I deal with those surprises? Movement is my best medicine. Hi everyone, My name is Josine and I feel honored to be able to share my story here. All the brave people on this page who share their challenges and daily struggles and how they overcome them are a true inspiration to me. I am a Dutch mother of 4 (2 of my own and 2 'presents'), and I have Ehlers-Danlos syndrome(EDS). This is a connective tissue disorder. The connective tissue of people with EDS is not as strong and supportive as it should be, resulting in all kinds of health issues. Connective tissue is everywhere in our body, like a spider web, influencing everything: joints, organs, brain, skin, etc. People with EDS are also hypermobile, which makes their joints unstable and their muscles permanently strained from trying to keep the joints together. My biggest problems are my heart (hypermobile valves, enlarged heart, heart rhythm disorder, etc), my intestines (to keep it short: they just don't work) my spine (scoliosis, arthritis, discopathy, hernia), vascular malformations, and other ongoing issues like joint (sub)luxations and the weirdest injuries. EDS also stands for Every Day a Surprise because there is always something going on and people with EDS constantly have many health issues to manage. This is challenging, especially because there is no case manager or other main doctor that guide us, we need to manage all the different medical issues ourselves, we have to explain to doctors what is wrong, what kind of treatment we need and we are constantly advocating for the right care. Another factor is that most of the symptoms are invisible, which makes it hard for people to understand what we have. I get this because for the most part, I don't even know what is going on in my body so how can I expect somebody else to understand? There is always something going on but what helps me the most on a physical and mental level is movement. I used to work in sports, but could not combine this with my medical issues. I used to specialize in pre and postnatal fitness and was a CrossFit coach. I had to quit because I was always injured. I missed CrossFit but I thought that was not possible anymore. After an intensive rehabilitation program, I learned to move differently, walk differently, lift differently, and even sleep differently. After that, I did some fitness in a regular gym but did not enjoy it as much. I missed the variety, the challenge, and the community. After a while, I decided to try a new CrossFit box where nobody knew me and I started from zero. I scaled most movements but was very happy to be able to do it again and slowly I realized I could do more and more. This was half a year ago and at the moment I am working out almost daily and love it. Of course, there is still chronic pain and chronic fatigue but I feel that my pain is less, my joints are more stable, my muscles are stronger and my posture improved. But above all that I feel so much better in my head. I am happier, I feel stronger because I constantly challenge myself and I am part of a community that is very positive and supportive. Even on days when I have lots of health struggles, I feel better because I know there are also things that I can do and I am more than a patient. I think I am also a nicer wife and a better mother because of this. I hope to set an example by showing my kids that movement is fun, makes you strong, and makes you feel better. My sons also show signs of EDS and I am glad that I know what they have and know how to advocate and care for them. My own diagnosis took a long time but knowing they are already being monitored at this young age is a good feeling. I know some people feel frustrated when they see my pictures and hear mysteries because they would also like to be more active. Movement can also be frightening when you are scared of injuries, an increase in pain, or more fatigue. I know better than anyone how this feels and totally understand the fear but I am always hopeful that people are still willing to try. You don't have to do CrossFit if you don't want to, but try to look for things that you enjoy, and that you can keep up with. Everything is a win: more steps in a day, more movement in or around your own home, a training program guided by a PT, swimming, cycling, pilates, online workouts, rolling with the wheelchair, whatever works for you. It also helps to find people who can support and motivate you. You don't have to go together, supporting each other online or through the phone is also helpful. And make sure you are proud of yourself for every activity and every time you try. Even if it does not work out the way you planned, it is not about the results but about how it makes you feel. Next to my personal fitness and health journey, I am also trying to improve the sports and movement options for people with chronic diseases and disabilities because I manage a 'living lab' in Amsterdam. I am glad to have this opportunity so I can combine my professional and personal experience and put it to use to help others. Anyone who would like to connect and share experiences is very welcome to look me up on the socials. I would love to meet people with the same passion for sports but also people who would like to be more active but don't know where to start. Contact me and hopefully, we can help and support each other.

My Story My name is Kelsey! My Instagram is @kelseyy.ryan. I was born without my right hand. My family doesn’t exactly know why I was born this way. It was never seen on any ultrasounds, but doctors have guessed that it may be due to amniotic band syndrome. Growing up, I had a lot of ups and downs. I’m fortunate to have an amazing family that loves me and doesn’t treat me like I’m different. They’ve always supported me in anything I wanted to do. However, even with their support, it’s still not easy being other than most people. Unfortunately, like many children that are different, I experienced bullying throughout my middle school years. I was called names, made fun of, and left out because of my arm. I started noticing the stares I would get from strangers in public. I imagined the awful things these strangers were probably thinking about me in their heads. This obviously caused a lot of self-esteem issues. I started to hide my arm and hate myself for being different. I experienced depression and anxiety and desperately just wanted to be expected. Luckily, as time went on and my peers started to mature, the bullying stopped. Although the insecurities were still there, I started to become more comfortable in my own skin again. In high school, I created my first YouTube channel where I posted one-handed tutorial videos to help other people like me. I also joined social media groups with other limb different people and discovered this whole world that I never knew existed. This really helped my confidence knowing that there are other people out there that are just like me. It gave me a new passion to spread my story and help others not feel alone. I began advocating for body positivity and educating others on limb differences. I used my voice by competing in the Miss America Organization, speaking at elementary schools, and with college groups, creating YouTube videos, and starting a limb difference podcast. I’ve never let my difference stop me from anything. I was a cheerleader for 10 years and cheered Ball State University. I’ve participated in musical theatre my whole life, and I’m currently a registered nurse in school to become a psychiatric mental health nurse practitioner. Creating a more inclusive world is something I’m so passionate about and I’m excited to continue to share my story in hopes that I can inspire others.

Hasn't been all easy... We spent 55 days in NICU, and another 15 in PICU when she was 7 months old when her shunt failed, and its replacement failed. She had her back closure surgery and first shunt at 4 hours old, laminectomy surgery at 14 days old, and tethered cord surgery at 23 months. And lots and lots of therapy. She developed and worked through extreme medical anxiety. But through it all... Her personality has always shone through. That's not to say that there haven't been tears, or frustration, or even anger. She is, after all, a child learning about and working through her emotions...emotions which are normal. But her default, when she's not intently reading or drawing, is what you see in these pictures. But back to the question... What's in a name? In her case, the name we chose well before her birth had deep meaning and hope attached to it. Her first name is Evanna, a feminine version of the name Evan, which from Gaelic means young fighter/warrior. And her middle name? Joy. No two names could fit her better. To follow her story more... You can find her FB Community Group at fb.com/EvannasJoy(or search Evanna's Joy on FB), and she happens to find her way onto my IGquite often. 😂