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Hereditary Angioedema (HAE 3) and Me Hi, my name is Jill and I’m a 33-year-old California raised, self-proclaimed mega nerd. I was diagnosed with the Rare Disease Hereditary Angioedema Type 3 (or HAE for short) last year, though HAE has affected me for 15 years. HAE causes unpredictable attacks internally. During these attacks something triggers my blood vessels to become “leaky” and that leaked fluid turns into massive, painful, potentially lethal swelling *anywhere in the body*. Attacks can last days on end, for me it happened bi-weekly. The attacks are located in the airway, intestines, limbs, face, and more. Since this is a genetic blood disorder and not an allergy, it does not respond to normal medications like Epipens or Benadryl. Without vital HAE medications, patients have a mortality rate of 1 in 3. אנגיואדמה תורשתית ואני היי, שמי ג'יל, אני בת 33 מקליפורניה ומגדירה את עצמי כמגה חנונית. אובחנתי עם המחלה הנדירה אנגיואדמה תורשתית (HAE) סוג 3 רק בשנה שעברה, אך היא השפיעה עליי במשך 15 שנים. המחלה מתבטאת בהתקפים חוזרים ובלתי צפויים של בצקות באיברים שונים בגוף. התסמינים אצלי תכופים מאד - בערך פעמיים בשבוע. לרוב הן מופיעות באיזור הפה, בדופן המעי, בגפיים, בפנים ועוד. מאחר שזו מחלה גנטית שאינה ניתנת לריפוי, היא אינה מגיבה לתרופות רגילות כמו אפיפן או בנדריל. ללא תרופות חיוניות המסייעות בהקלה על ההתקפים, שיעור התמותה מהמחלה הינו 1 מ-3. Diagnosis and awareness are the keys to saving HAE lives Having a Rare Disease has undoubtedly changed my life in more ways that one, but not all for the bad. When I first found out I have this rare, potentially life-threatening illness, I decided that I only had one option: advocate. I chose to be the best Rare Disease HAE Warrior I can be. If I have to live with an incurable genetic disease, then I am going to be the loudest, proudest, and best advocate for HAE that I can be. Because of HAE 3 I have become a stronger person, I’ve made some amazing friends in the Chronic Illness/ Rare Disease Community, and now co-author a Rare Disease blog called @chronically__chill. For more info on all 3 types of HAE please check out: HAEA.org דיאגנוזה ומודעות הן המפתח להצלת חיים המחלה הנדירה, ללא ספק שינתה את חיי מכל מיני בחינות, אך לא לרעה. כשגיליתי לראשונה שיש לי את המחלה הנדירה הזו, המסכנת חיים, החלטתי שיש לי רק אפשרות אחת: לתמוך. בחרתי להיות הלוחמת הכי טובה שאני יכולה במחלה. אם אני צריכה לחיות עם מחלה גנטית חשוכת מרפא, אז אני הולכת להיות הכי חזקה וגאה שאני יכולה. בשל המחלה הפכתי לאדם חזק יותר, הכרתי כמה חברים מדהימים עם מחלות כרוניות / נדירות, ועכשיו שותפה בבלוג הנקרא chronically chill. לקבלת מידע נוסף על שלושת סוגי האנגיואדמה התורשתית: HAEA.org

A Little About Me and My Dream! Hello to everyone! My name is Madison Emily Hoffman, but most of my friends call me Maddie. I am 9 years old and have a severe skin disorder called Ichthyosis. It's hard to say, much harder to understand and explain to my friends. To some of them (probably most of them) I am just “different”….not like them. I have always been able to be friendly and have a good time with almost everyone, but sometimes, my feelings get hurt, and I am sad, because they don’t understand. Ichthyosis has about 30 different types and mine is one of the most severe. Just my luck right? Not only do I look different with very thick, scaly skin that can have an odor no matter how clean I am, it can be very itchy and painful, too. I can’t wear tight shoes or tight clothing. I have to be very careful because I easily get skin infections. Guess what? I spend at least two hours a day in the bathtub! Some really nice nurses have come to my school from Cook Children’s Hospital. They have told every class about my condition, and sometimes that helps, but I think that for the most part, the kids just feel sorry for me. Sometimes, I am made fun of and bullied about my skin, because it does look bad some days. I try to be brave and finish my day. My Momma tells me everyday, to be brave and study hard. I honestly do try my hardest, but sometimes I am exhausted from being good and doing kind stuff. It’s not just the look of my skin either. It is also that my body hurts. My skin tightens and sometimes I can barely walk. That is when my Momma carries me. I love being on stage My favorite thing in the world is being on the stage, either dancing, or singing. Now, I’m even thinking about acting classes. I love to perform for my Momma, my grandparents, and my brothers. I also LOVE to go to Casa and watch the show for children. One day, I am going to be on a stage, somewhere. I am most happy when I am all dressed up for a dance recital, and know all of my family will be there. It makes me feel like I am normal, you know, like the other kids. Pretty costumes and make-up make me “look” like everyone else….It’s all good to me. I love my brothers I love my brothers, and they love me. I don’t live with them since my parent’s divorce, but to me they are my heroes. I love to be a part of their lives whenever that is possible. They laugh at me, but I know they really just think I’m funny…”Thank you, thank you very much,” I say. We use facetime a lot when I am not with them so I can have them close to me. I really miss my brothers and my dad when I am not at home with them. And, then there is Kinlee Then there is my baby sister, Kinlee. She is a lot of fun, and most of the time we get along, but there are times when she well, just drives me crazy…..not really, but she always has to have things her way and she always wants what I have, no matter what it is !!!! You get the point…but, we are after all sisters, and I love her with all my heart. God Bless My Momma I could write a book about my Momma, but sometime just short and sweet is best. She is my champion, my support group, my Queen, my favorite fan, and she keeps me and my body in the best condition possible. She works really hard to make everything work for all three of us, but she manages to keep close to God, and that helps her the most. Ewwww…Doctor Visits You may or may not understand, but I HATE to go to the doctor. I don’t care what kind they are, because I know they are gonna want to ask questions that are hard to answer, and make me feel even more different than I already feel. Maddie’s Big Dream My big dream and my fondest wish is to be on The Ellen Show. When I’m there, I want to make everyone aware of this disease and how research and funding for trial programs is so very important. Research has come a long way in making things better for all of us with Ichthyosis, but more and more needs to be accomplished if we are ever going to find a cure. One Day…MY BIG DREAM WILL COME TRUE. I love to watch the Olympics and mostly the gymnastics because their stories make me want to be better than I am. I really try harder every day. Can you help me get the word out about my disease? And, help other kids like me who suffer from rare disease. ICHTHYOSIS IS AWFUL, AND IT IS PAINFUL. It is very difficult to live with. Please take some time and share my story and together we can find a cure for this stuff.

Down Syndrome Misunderstood When we first learned we were going to have a child with Down syndrome, we were scared. We didn't personally know anyone with Down syndrome, so all we knew about it was the little our geneticist told us, and what we had picked up over the years. We knew about the cognitive and physical delays, and we knew about the miriad of health problems people with Down syndrome are prone to. We researched more and more until we knew everything about Down syndrome; at least we thought we did. When Hannah Joy was born, we quickly realized everything we thought we knew about Down syndrome was a misconception. What Down Syndrome Means to Us We looked at our brand new baby and saw just a baby. A baby with perfect, almond shaped eyes and chubby hands and fingers. When we looked at Hannah we didn't see her two heart defects, we didn't see the possible delays or other health problems; we just saw Hannah, and that is still all we see almost a year later. Before she was born, we thought our lives would revolve around Down syndrome; we thought it would define our family, but it doesn't. The therapies and doctor appointments we go to are just for Hannah, not Down syndrome. Down syndrome is not defined by the negatives, and Hannah is not defined by Down syndrome. She is her own person. She is not Down syndrome, she is just Hannah. She is full of joy and love for everyone she meets. She has been through several hospitalizations and open heart surgery, all with a smile on her face. She has incredible strength and resilience, and is so much more than a diagnosis. She has taught us so much over the past year. She has taught us to be kinder, to enjoy life more, to be joyful even in uncomfortable circumstances, and to not be defined by what society thinks. She teaches us new things each and every day, and I hope and pray she continues to teach us for the rest of our lives.

סיפור העקמת שלי היי! שמי מישל, אני בת 27 וחיה בקליפורניה. אובחנתי עם עקמת בכיתה ו' כשגדלתי בשוודיה. עקמת היא עיוות בעמוד השדרה. זה הרבה מעבר לאסתטי, זה יכול לגרום לכאבי גב, קשיי נשימה, עצבים לחוצים, דיכאון, דפורמציה ולעוד תסמינים רבים. במקרים חמורים נדרש ניתוח חיבור חוליות בעמוד השדרה כדי לתקן את העיוות. לאחר לבישת מחוך אורטופדי במשך שנתיים, נזקקתי לניתוח בהקדם האפשרי. אני זוכרת שהייתי מאוכזבת מאוד ופחדתי מהעתיד שלי. לפני העקמת החלום הגדול שלי היה להיות שחקנית טניס מקצוענית, חלום שהתנפץ עם האבחנה שלי. My Scoliosis Story Hi! My name is Michelle, I am 27 years old living in California. I was diagnosed with Scoliosis in 6th grade when growing up in Sweden. Scoliosis is an abnormal curvature of the spine. It is much more than aesthetic, it can cause back pain, trouble breathing, pinched nerves, depression, deformation and so much more. Severe cases require spinal fusion surgery to correct the curve. After wearing a Boston Brace for 2 years I was out of time, I needed surgery ASAP. I remember being really disappointed and feeling scared for my future. Before Scoliosis my big dream was to be a professional tennis player, this dream was shattered with my diagnosis. ללמוד לחיות עם כאב כרוני הניתוח וההתאוששות היו גיהנום עבורי ועבור משפחתי. לאחר הניתוח הכאב שלי לא שכך וצילומי הרנטגן לא הראו שום דבר חריג. נכנסתי ויצאתי מבית החולים לטיפולים בכאבים במשך שנתיים עד שקיבלנו את החדשות. פיתחתי זיהום עמוק בבטן שלי, שככל הנראה נגרם ממוטות הטיטניום והברגים שהושתלו בעמוד השדרה שלי, ולא זוהה בכלל במשך שנתיים. מיד הוציאו ממני את הטיטניום ואיתו את הזיהום. היה לי מזל ששרדתי. לקחתי אנטיביוטיקה במשך שישה חודשים לאחר מכן. זה שינה באופן משמעותי את מהלך החיים שלי. היו לי תופעות לוואי שונות מאז ללא הפוגות מהכאב, אז הייתי צריכה ללמוד לחיות עם כאב כרוני. Learning to Live with Chronic Pain Surgery and recovery was hell for me and for my family. After surgery my pain never really subsided, x-rays did not show anything wrong. I was in and out of the hospital for pain management for 2 years before we got the news. I had developed a deep infection within my abdomen, most likely caused by the titanium rods and screws placed in my spine, which was completely undetected for two years. I was immediately admitted to have the titanium removed as well as the infection. I was lucky to survive. I took antibiotics for six months following. This significantly changed my course of life. I have had different side effects ever since. I haven’t been pain-free since, so I had to learn to live with chronic pain. אני רוצה לעזור לאנשים אחרים השרויים בכאב 10 שנים לאחר מכן, כיום אני במצב כפי שאתם יכולים לראות בתמונה לעיל. כרגע חמישה שבועות לאחר הניתוח השלישי בעמוד השדרה - רק אחד מהצעדים הדרושים כדי להקל על הכאב היומי שלי. לא נתתי לגב שלי לעצור אותי לגמרי, לימדתי את עצמי אימון גופני ותזונה ולקחתי שליטה על גופי. הרצון שלי הוא לעזור לאחרים השרויים בכאב לא רק עקב עקמת. תחיו חיים פעילים ובריאים! החוויות שלי בהחלט חיזקו אותי ואולי הפכו אותי לאישה שאני היום. איבדתי הרבה אבל גם קיבלתי כל כך הרבה נקודות מבט עליהן לא הייתי מוותרת, לעולם אל תוותרו! I want to help people others who are in pain Fast forward 10 years to present day as you see me in the photo above. I am currently five weeks post op from my 3rd spinal surgery. Just one of the steps needed to help ease my daily pain. I haven’t let my back totally stop me though, I educated myself in physical training, coaching and nutrition and took control over my body. My wish is to help others in pain not only due to Scoliosis, live active and healthy lives! My experiences have definitely made me a strong individual and possibly made me the woman I am today. I have lost a lot but also gained so much perspective that I would not trade, never give up!

התגברות על מכשולים ב-26 באפריל 2016 הוכנסתי לכיסא גלגלים על ידי נהג שיכור ומניסיון זה למדתי כל כך הרבה דברים שמעולם לא הייתי מסוגל להעריך ללא הקשיים הקיצוניים איתם אני צריך להתמודד. Overcoming Obstacles April 26, 2016 I was put in a wheelchair by a drunk driver and through this experience I have learned so many things that I would have never been able to appreciate without the extreme hardships I have and had to face.

#metoointhebirthroom I was 17 years old when I found out I was pregnant. I was very shocked at first, but always dreamed of having a beautiful baby and family so I decided to keep my blessing. My pregnancy went quite well health-wise and I continued to go on with my sixth term, but ended up having my son just a few months before I finished. During the 9 months, I went to college and had to leave due to discomfort but ended up doing my course from home in health and social level 3 extended diploma and left with D*D*D*. Birth Story I had an emergency C-section, because I wasn’t dilating. I remember waking up the next day, and seeing this beautiful baby boy. I coudlnt even believe he was mine he was so small and tiny and looked so peaceful. I don’t remember even holding Riley when he was born as I was so unwell. Riley’s dad told me about two years after that him and my mum were holding Riley on my breast that night to feed him. I missed the best first moments, which makes me the saddest. Whilst in the hospital, I saw all the other mums and of course they were all older. They looked fine and were just getting on with things, and I just thought, ‘well if they can do it, then I’m sure I can’, plus I didn’t want to look incapable ‘because one of my biggest fears was having Riley taken away, so I didn’t mention how much agony I was in. My blood pressure had also gone up straight after the birth and I was put on blood pressure tablets. Early Post Birth Midwives came out every day when I went home to check my blood pressure. I remember reading on a correspondence note to the midwives from my GP, ‘I know this patient and I’m not too sure about her mothering skills’. This obviously shocked me and I felt even more under pressure. I could hardly move and was waking up during the night in puddles of sweat having to change my bed sheets and clothes. I didn’t mention it at first as I had seen that note and didn’t want to seem like I couldn’t handle it. I physically couldn’t even bend down to pick up my son, I was in agony. I eventually mention my symptoms of changing my sheets and clothes at least 3-4 times a night to the midwife; she said it was due to me breastfeeding. 11 days later, a midwife came out and said my blood pressure and temperature was really high and that I had to go back into hospital. I was given antibiotics as I had an infection in my blood. I went home and then had to be rushed back in to hospital within a few hours. I was then told I had a womb infection, from the atmosphere of the operating room. We begged for an ultrasound scan The consultant came and did an ultra-scan and then I just remember the consultant saying, ‘she needs to stay close to me’ and rushed off. I was so confused as he didn’t explain what he saw, so I went on to ask another doctor who said it was the placenta. Within the next day, I was due to have surgery to remove the placenta but they said I couldn’t have the surgery anymore. They said it wasn’t an emergency, 'as my head was not falling off''which is fair enough, but just made me feel more and more like a young mum that was exaggerating. A nurse came to me and said ‘something wasn’t right here’ and within 10 minutes she had brought a surgeon up and I was being organized to go into surgery. They removed the placenta and blood clots and then within 24 hours, I went home. I started to feel better but still noticed an unusual pain that I’d never had before. I carried on for about a month and a half and then I saw my GP who said that it was down to the C-section. My stomach was swollen, red blotches all over, and it would sweat to the point where I could poor a glass of water of my stomach. I tried to get on with it but kept ending up on the floor in pain and in A&E pretty much every week for 9 months. I couldn’t eat or leave the house hardly, I was constantly bent over in pain, I could hardly put any pressure on my left leg and was constantly throwing up and loosing myself. 9 months and I was finally slightly heard After 9 months, I was finally referred to a pain clinic. I had an epidural in my spine straight away for pain relief for a laparoscopy. They found adhesions, removed them and then discharge me. After having a nerve injection that sent shocks up my back and down my leg, the doctor abandoned the procedure during, and the pain clinic then refused to give me any further treatments. This was the worst feeling because my life had completely flipped around, I could hardly even look after my son properly. I was then put on Fentanyl patches and have had to remain on them for almost four years now, which has ended up taking a toll on my body as I have been rushed back to the hospital on numerous occasions with pancreittis. I have been told I have nerve entrapment, and had to have my scar reopened in Febuary of last year as two nerve branches were completely tangled around my scar. They also said I have severe nerve damage across my scar and down both my legs. At my last gynaecology appoiment I was asked if I was finished having children. I am now on a waiting list to see a radiologist for another invasive surgery to help for the pelvic congestion syndrome. I also now have a sprain in my hip and my spine is slanted to the right, which causes discomfort. This is due to the pain being so bad on the left side that I put more weight on the right side, which has twisted the spine. I am not sure if they really understand what’s happened or going on, which is very frustrating and I still feel like I’m battling at times, but things are getting there. Inspired by my experience, I have decided to create children’s books focusing on children and parents with disabilities as I have found it quite difficult to find the right words to explain to my son about my condition and why I am unable to do certain things with him. The aim is to help children have a better understanding on what they or their parents might be going through. I’ll be talking more about this in my next blog post along with how my condition has affected my life, so keep an eye out! #MeToointheBirthRoom. #EverythingIdois4u

Stomping on Cerebral Palsy Living with Cerebral Palsy has its ups and downs, but I wouldn’t trade it for the world. There are many things I want people to understand about my condition — just because I have this condition that God has blessed me with doesn’t mean it has me. There are many great things about having Cerebral Palsy. Where do I start? Well, for one thing, since I live in Florida I like to go to Universal Studios now and then. I can go on every roller coaster first. If it’s my favorite ride, for example, (I’m a huge fan of the Harry Potter theme parks). I would often like to go twice despite my mother’s wishes to stay behind. So, I enjoy the perks of having a disability when you visit a theme park in the busiest time of the year. Another thing I enjoy about having Cerebral Palsy is having the advantage of coming up with fresh ideas for Halloween costumes. When I was about eight years old, my mom and I had come up with the idea of being a dead zombie in my wheelchair since I had the body cast. We had my face painted, and I was passing out candy to the children since I couldn’t go out trick-or-treating, but I made the best out of it. I also enjoy the fact that I'm always unique — I stand out like a plum and people are still curious to know my life story. It’s a perfect feeling to see that you’ve made somebody’s day and taught them a precious lesson about life — that not everybody with a disability wants you to feel sorry for them. They want you to know what the disability is so you become aware of what it could bring in in your life, which is many blessings. Although there are days when Cerebral Palsy is tough, and you feel like the world is crashing, I often remember how it could’ve been worse for me, and I probably wouldn’t be here today. As a young child, I was able to do many things. I was able to travel out of the country to Mexico and the Bahamas. I was able to co-pilot an airplane and fly all over the Everglades through an organization called Challenge Air. I was able to play sports. I played softball on a team for a few years, and I enjoyed it — getting to meet new people with disabilities and explore the world, playing as a team. It’s a life-changing experience. I have been playing basketball on and off for a couple years, and that was fun, but I prefer softball more. I published a book at the age of 16. The point I’m trying to make here is that if you have an obstacle, don’t let it defeat you. You have to stomp on your barrier no matter what the world brings you. That’s why I started my own Facebook page called Stomping on Cerebral Palsy with Tylia, so that I can allow myself to be heard and to inspire others with Cerebral Palsy to stomp on it, regardless of what comes your way. That is my main goal in life — I’m just stomping on CP one step at a time.

How Ehlers Danlos Syndrome Affects Me My name is Ruby and I am 21 years old. I was diagnosed with Ehlers Danlos Syndrome in 2012 after suffering from unexplained, widespread chronic pain. Since then I have battled with my condition to get it under control, and I have experienced many other issues along the way. Physically, my condition causes chronic pain in my joints. It also causes dislocations, fatigue and I have to take strong medication that can wipe me out completely. My Ehlers Danlos Syndrome has caused many psychological problems, and in 2014, I was hospitalised for severe Anorexia. Raising Awareness for Ehlers Danlos Syndrome & Chronic Illness Whilst battling all of these issues, I still managed to achieve two A*’s and an A grade in my A Levels, and I am now in my second year of University, studying English Literature. Despite Ehlers Danlos Syndrome being incredibly unheard of and misdiagnosed – along with judgemental stares for being in my wheelchair one day, and walking the next – I continue to raise awareness for this chronic disease. I am hoping to become a Journalist but I also have a huge interest in makeup, and I love challenging the stereotype around what disability ‘looks’ like. I want people to know that disabled people are beautiful and strong and can do whatever the hell they want.

How it all started My name is Aimee. My daughter, Emily, was born with Spina Bifida and Hydrocephalus. Emily is 11 now, and just started senior school, or high school in the US. We live in southern England. I have created a blog for parents and carers to share their experiences of having a child with a disability: www.rollinwithmama.com. I found talking to people in a similar situation to me to be very good therapy. I found that a lot of other people didn’t understand at the baby groups which I took her to, so finding charities and other children with a similar condition as Emily really made life a little less difficult. Walking is overrated When Emily was a baby, there was so much to learn, not only about how to change a nappy, but the complete workings of her bowel and bladder, how to give her physio on her legs. We learnt what to do in an emergency, because she has a VP shunt inserted to drain the fluid from her brain, that is Hydrocephalus. Shunt’s can be trouble, so we were given instructions on what to do if it stopped working, and it did, quite a few times. As soon as Emily was born, I kept getting asked the same old questions. “Is she crawling, is she walking yet?” “No, no, no and …..no!” It took a long time for our relatives to get the hint. Walking is overrated anyway. My husband and I decided immediately that as long as Emily was happy and confident, then everything else was not important. Fast forward to today Fast forward to today, and Emily has a wonderful group of friends. She has an amazing sense of humour (no not a typo, I am English!) She is extremely confident, I think even more confident than me. She is very independent in her wheelchair. Emily plays wheelchair basketball and goes to martial arts, Choi Kwang Do. As a family, we have a lot of hurdles, but continue to tackle whatever life throws at us, by talking, sharing and helping other families going through the same thing.

Struggles Don't Stop Me Every time it rains, I always reminisce about my struggles during my days as a college student. I am sure that when you're a wheelchair user yourself, you understand how inconvenient it is for us to go outside your home when it's raining. Don't get me wrong, I love the rain, I truly do, but the struggle it could cause me and to those who accompany me makes me somewhat a little bit hate the rain. Back then, rainy days made me want to just stay at home and cancel all my errands, which at that time was to attend class. Let me give you a scenario - imagine a guy wheeling his wheelchair or someone pushing his wheelchair for him in the middle of the rain, wearing his freshly washed and ironed school uniform getting wet because his umbrella is not a wheelchair-friendly one. You'll see him soaked before he could reach his destination. Can you envision this struggle? I feel you. Because, that guy was me. I have a reason then to not to attend my classes when it's raining, but guess what? I never took advantage of it. I've never used rain as an excuse. To be honest, I could actually consider it a privilege, but learning is very important to me. I could sacrifice my convenience just for the sake of learning. Learning is for Everyone Actually, I was not the brightest, the smartest or the most intelligent kind of student then. I was an average student who seemed naive about certain topics, but was really willing to learn. I've had used that as my advantage and driving force to continue learning. Something I could be proud of myself right now is the fact that I'm not that naive person I once was (but still somewhat naive at times, hehehe). Behind everything that I have accomplished right now, the credit does not only belong to myself. The credit goes to everyone who has helped me, most especially to God, my parents, my siblings, my family, my friends and my old self. To me, learning is for everyone. No matter what your life status is, your gender, your age, your form, your ability, your ethnicity, etc. Those I've mentioned are not barriers or perhaps anythat that would hinder you towards learning and achieving your dreams in life. I myself am living proof that no matter how hard it may seem to learn, as long as you are willing to learn, you can learn. Don't let your circumstances control you, take it as your motivation instead.

מהי בריאה על גלגלים? היי לכולם! אני רק רוצה להציג את עצמי. שמי אלנה, ואני בלוגרית וסטודנטית לקולנוע מאירלנד. התחלתי להפעיל בלוג בקיץ האחרון כתחביב ופיתחתי אותו למשהו שאני מקווה שיהפוך לעסק יום אחד. אני כרגע ממתגת אותו מחדש קצת אבל הבסיס של הפרויקט עדיין שם. רציתי ליצור קהילה לאנשים עם מחלות כרוניות ואנשים עם מוגבלות כדי שיוכלו למצוא מקום בו יחושו חיבור. בעידן של השפעה פרסומית באינסטגרם, חשוב שהסיפורים ה"אמיתיים" של חולים כרוניים יהיו מיוצגים ובולטים. יש לי מחלה נדירה שנקראת דרמטומיוזיטיס (דלקת עור ושרירים), ומעולם לא הייתה לי קהילה או אדם להתחבר אליהם. זו הסיבה העיקרית שהתחלתי את "בריאה על גלגלים". התחלתי כחשבון אינסטגרם והמשכתי משם, ועכשיו אני משתפת את החוויות שלי ושל אחרים וכן מתכונים. בישול הוא הסחת דעת גדולה ממני, אז רציתי לשלב את התשוקה שלי לשיתוף סיפורים עם אהבתי לאוכל במקום אחד. What is Wheelie Healthy? Hey everyone! I just want to introduce myself. My name is Alannah, and I'm a blogger & Film student from Ireland. I started blogging last summer as a hobby and I've grown it into something I hope to turn into a business someday. I'm currently rebranding it a little but the bones of the project is still there. I wanted to create a community for people with chronic illnesses and people with disabilities to find somewhere they can go to relate to something. In an age of crisp instagram feeds and paid influencers, it's important that the "real" stories of chronically ill people are represented and shine through. I have a rare condition called Dermatomyositis, and I never had a community to connect with or anyone to really relate to. That's the main reason I started Wheelie Healthy. I started as an instagram account and went from there, and now I share my own experiences, the experiences of others as well as easy to follow recipes. Cooking is a great distraction from me, so I wanted to combine my passion for sharing stories with my love of food in one place. בדקו את "בריאה על גלגלים" אתם יכולים למצוא אותי ב wheeliehealthyblog.weebly.com ויש מידע ליצירת קשר בדף אם אתם רוצים ליצור קשר. אנו מציגים כותבים אורחים, יוצרים חולים כרוניים ואני אשמח לשמוע גם על כמה מהמתכונים האהובים עליכם! הפעלת הבלוג אפשרה לי להתחבר עם אנשים, לחלוק את החיים שלי עם אנשים ואפילו הביאה אותי לבימת Tedx. זה דבר שאני אוהבת ובעוד שזה מאתגר, זה גם מתגמל מעבר למילים. אז בואו להצטרף לכיף! Check out Wheelie Healthy You can find me at wheeliehealthyblog.weebly.com and there's contact info on the page if you want to get in touch. We feature guest writers, chronically ill creators and I'd love to hear some of your favourite recipes as well! Blogging has allowed me to connect with people, to share my lfe with people and has even brought me to the Tedx stage. It's something I adore and while it's challenging, it's also rewarding beyond words. So come join in the fun! Alannah @ wheelie healthy x

היום שבו נולדתי שמי יסניה לונה ויש לי שיתוק מוחין. ב-2 באפריל 1999, נולדתי מתה בשל רשלנות של האחות שהייתה אחראית לטפל באמא שלי כשכרעה ללדת. הרופאים החזירו אותי לחיים, אבל הנזק שנגרם כתוצאה מחוסר היכולת לנשום היה בלתי ניתן לריפוי. המשפחה שלי תמיד הייתה שם בשבילי. הוריי הקריבו זמן מילדיהם האחרים כדי שיוכלו לקחת אותי לפגישות פיזיותרפיה ולניתוחים שיעזרו לי להיות עצמאית. הוריי הם הסיבה שאני הנערה שאני: חזקה, עובדת קשה, אמיצה ולא מוותרת. להיות עם שיתוק מוחין זה קשה אבל לא בלתי אפשרי. אני בת 18 עכשיו והמטרות שלי הן להיות מעצבת אופנה ודוגמנית בכסא גלגלים כדי לייצג אנשים עם מוגבלויות. The Day I was born My name is Yessenia Luna and I have Cerebral Palsy. On April 2nd, 1999, I was born dead due to negligence by the nurse who was responsible for taking care of my mom when she was in labor, getting ready to have me. The doctors brought me back to life, but the damage produced by the inability to breathe was incurable. My family has always been there for me. My parents have sacrificed time from their other children to be able to take me to physical therapy appointments and surgeries that would help me to be independent. My parents are the reason I’m the girl I am: strong, hard worker, brave and never giving up. Having Cerebral Palsy is hard but not impossible. I’m 18 now and my goals are to be a fashion designer and a wheelchair model to represent people with disabilities.