Arthrogryposis Multiplex Congenita

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    Community Voices

    Mac’s Guide to AMC

    Today is June 30, which for people like myself is a very special semi-holiday known as AMC Awareness Day! But you knew that, right? Of course you knew that today people across the world are posting pictures of themselves in blue to show support for my disability, right?
    Okay, I’m being sarcastic. There are indeed many people wearing blue today, some for AMC, but I know there’s a lot more who have no idea what I’m talking about. And that’s perfectly okay! It’s impossible to know about every disability and how to best show your support. But as someone with AMC, I can’t help but try to let as many more people as possible know what it is. So prepare yourself, reader, to become a more educated person!
    AMC stands for Arthrogryposis Multiplex Congenita, which essentially means “born with curved joints” in Greek. So that part is pretty self explanatory. But because AMC isn’t really diagnosis in itself, it’s more like a group of symptoms that can be caused by something else, there are a lot of different types of Arthrogryposis. The type I have, Amyoplasia, is most common with about one in 10,000 live births. For any type of AMC, it’s about one in 3,000 live births.
    Since Amyoplasia is a condition I’ve lived with all my life, I’m going to focus on that for this article. I’d really hate to give out any misinformation about another type, and sometimes no amount of internet research can keep that from happening. So with the basic idea of Arthrogryposis in your head, here’s a few facts about Amyoplasia that I feel are important:
    1. Amyoplasia isn’t genetic. It’s caused by a lack of movement in the womb, which in itself can have a lot of different causes.
    2. Curved joints aren’t all. Underdeveloped muscles, club feet, limited range of motion, soft skin, fused or stiff joints, and thin bones are some of the other symptoms.
    3. I have AMC in all four limbs, but that’s not the case for everyone. Sometimes only one or two limbs have all of their joints affected, while the others are normal or have less severe contractures. It all depends.
    4. Amyoplasia isn’t really something that can be cured, but it can be treated. Splints, physical and occupational therapy, assistive technology and sometimes surgery can make a world of difference in what people with Amyoplasia can do.
    5. Everyone is different. Because it can have so many causes, and affects different joints and limbs to different degrees, no two cases of Amyoplasia will look exactly the same. This is why it’s important to remember that none of us are experts just because we have this condition, and so we can’t speak for the whole Arthrogryposis (or even Amyoplasia) community. Myself included.
    So that’s it for today! I hope my guide wasn’t super boring, and thanks so much for reading! Thanks also to anyone wearing blue for us today, or who took the ArthroPIEposis challenge this month! I’ll post my picture later today. #ArthrogryposisMultiplexCongenita #Arthrogryposis #Disability #Selflove #CheerMeOn #DisabilityAdvocacy #MyCondition #AMC

    Community Voices

    My Dad’s Advice on Finding Love

    This might be unusual for a teenage girl, but I don’t hate my parents. In fact, I’m really close with my Dad. We talk openly about everything, and unless I’m actually putting myself in danger, he won’t judge me or tell me how to live my life. He always says I need to be independent and make my own decisions, and as long as I’m happy, he’ll support me.
    I’ve not felt the best the last week or so, and with my mom out of town, we’ve taken this opportunity to just chill and watch movies. So far, we’ve seen The Shape of Voice and The Professional, both of which deal with unique and unorthodox relationships. So we were talking, reflecting, and we got off on a tangent about the difference between what’s healthy and unhealthy.
    Partly because of my disability and also because of the awful situations my parents grew up in, I’ve been worried about my future relationships. To be specific, I’m afraid to end up with an abusive partner. I opened up to my dad about it tonight, and here’s what he told me:
    “Don’t get desperate, and don’t feel like you have to put up with behavior that makes you uncomfortable. If you don’t like it, walk. Getting married isn’t some box you have to check to be a successful person, so don’t feel pressured to stay.
    Learn to be happy with yourself. Love yourself, and if you don’t feel like you need someone else to complete you, you’re more likely to choose someone for the right reasons. As cheesy as it sounds, it’s scientifically proven that you’ll be happier if you just find your soulmate.”
    Pretty good, right? I promise, not all our ramblings sound this poetic. This just felt special though, and it seems like good advice, so I figured I’d share.
    #Disability #Arthrogryposis #ArthrogryposisMultiplexCongenita #Anxiety #Parenting #Selflove #Relationships #Love

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    Community Voices

    Escaping the “Spiral”

    I had kind of an argument with my dad just now. He wants me to post my writing so i can get my name out there, at least let the world know I exist. If you read my last post, you know I’m trying. But whenever I try to write what’s in my head, I start second guessing myself, over-analyzing what I’m putting down, and soon I’m thinking about my personal flaws and how I’ll never be good enough. Then I just give up on it. I call the thing in my head, which I’ve recently been told is my anxiety, the spiral, after the way it keeps pulling me deeper and deeper and never ends. I think I might’ve stolen that name from Turtles All The Way Down, but it works and I’m keeping it.
    I’m only just now learning how to escape when it pulls me in, and here’s my personal trick for escaping the spiral when I’m trying to write: I don’t read it. I type continuously without giving myself much time to think about the next word, just like I’m talking. Watching they keyboard and focusing on the letters helps keep it from getting overwhelming, too.
    My only published work is the guest blogger articles I write for a summer camp, and this ‘write like I’m talking’ method has really helped me get more written. Because the camp is for people with disabilities, it’s been a really great place for me to discuss my experiences with my Arthrogryposis, and sometimes anxiety and mental health things too. They’re pretty well known and do a lot of different things throughout the year, so I’m really grateful to be writing for them. It gives me the opportunity to write things that matter, and still get the exposure I need.
    Anyway , I got off-topic. But if anyone else has this problem writing with anxiety, maybe this method could help? I know it probably won’t work for everyone, and I might not be explaining it very well, but I just wanted to share. Happy summer!
    #Anxiety #Arthrogryposis #ArthrogryposisMultiplexCongenita #Writing #smallvictories #CopingWithAnxiety #WritingTips

    9 people are talking about this

    An Open Letter to Tim Cook From a Parent of a Child With a Disability

    Jan. 30, 2018 Tim CookChief Executive OfficerApple Inc.1 Infinite LoopCupertino, CA 95014 Greetings, My name is Robert James Ashe. We’ve never had the pleasure of meeting but I’ve been a huge admirer of both, you and Apple, for a very long time. I’ve worked in film and television for the past 20 years using Mac products to plan, design, edit and create works to entertain the viewing public. In my household, you will find Macbook Pros, iPads, iPad Pros, iPhones and a really old mac pro used by myself and my wife. My oldest daughter uses her iPad as her voice. One of the biggest things I’ve always admired about Apple was their commitment to giving people with disabilities access to your equipment. It is because of this fact that I am writing you today to make one small humble request. I am requesting that you add medical terms to the Mac’s spelling dictionary. The word I personally am after is “arthrogryposis.” I learned about this word just about seven years ago, when my daughter was born. It was one of the happiest and yet most challenging days of my life. My wife and I were given no indication that anything would be different about her pregnancy. It wasn’t until we were in the delivery room, and we heard the words “there’s something wrong” come from the nurses that we knew our lives were about to take a profound change. No one that night in the delivery room knew what was wrong. They just knew she was different. This was the scariest part about the whole experience — the “not knowing.” It was over the next week after dozens of tests and tireless searching by the doctors, nurses and even my mother, that we would learn about the word arthrogryposis. Here are a few facts for you about the condition: • Arthrogryposis means my daughter had multiple join contractures at birth in all four of her limbs.• This means her joints are stiff and “stuck.”• It affects about 1 in 3,000 live births.• There’s about 400 different kinds of Arthrogryposis• The most common is amyoplasia, which is what my daughter has.• There is no known cure, but through grueling therapy and surgery, we can greatly improve her mobility. After we brought my daughter home, my family got involved with Arthrogryposis Multiplex Congenita Support Inc.(AMCSI) run by families just like us who are going through the same experiences. I personally decided to try to become a better provider for my new family. I work as a television editor, and I worked as hard as I could using your equipment to show my higher-ups that I could do more for them. In turn, I was given more responsibility, and I get the privilege of coming home from work a happy man. As time goes on, I have been able to lend my talents to make logos for their yearly conference. Last year I created a logo using your equipment for “Arthrogryposis Awareness Day.” Every June 30, they ask all friends and family to wear blue to help support awareness for the condition. My whole family was wearing blue on the 30th, and my Mac-made logo was all over Facebook. I’m not an activist or a philanthropist, but I’m trying to figure out ways I can help to make a difference. Because of my work schedule, I probably spend way more time with Apple products than my actual family, so when I sit down to feebly attempt to write about the condition, you could imagine my frustration when the spell checker finds words like “arthrogryposis,” “amyoplasia” and “contracture” to be misspelled. I don’t like my computer telling me these words aren’t real. With the multitude of medical bills and thousands of hours of physical and occupational therapy, you could imagine there are no more real words for me in the English language. I’ve tried adding medical dictionaries to the dictionary app and adding a series of about 40 thousand medical terms to the spelling database, but I just can’t seem to get rid of that red underline. I know I can tell the computer to learn the word, but I’d love to know that from now on, anybody with this condition would never have to have a computer tell them that this diagnosis that affects their lives so greatly is not a real word. This is my way of spreading awareness. Being the smart man you are, I know you’ve also realized that by me writing an “open letter to Tim Cook from Apple” in such a public manner is another way of spreading awareness. I look forward to seeing what you guys come up with in the future as I know the iPad in particular is going to be a great therapeutic device for my daughter in the years to come. If you’ve made it this far through this letter, I applaud you for your patience and I look forward to the dictionary being updated. Having autocorrect being aware of the word would be amazing as well. It’s hard to type. Sincerely yours, Rob Ashesent from my iPad. We want to hear your story. Become a Mighty contributor here . image via Facebook

    How 'Scarman' Helped Me Understand My Daughter's Disability

    Five years ago, my daughter was born with a rare condition called arthrogryposis as well as additional cognitive delays. My wife quickly gravitated towards the internet support community to learn as much as she could, while I was feeling stuck, asking myself the larger questions about my daughter’s path in life. Right after her first birthday, we found ourselves attending a National Support Conference for Arthrogryposis. It was there I met “Scarman.” Ward “Scarman” Foley was born with arthrogryposis and has spent the last 30 years giving speeches across the nation and abroad. He is also a published author and hospice volunteer. He spoke at that conference and engaged new parents, old parents, teens and adults who had never met another person with the same condition. These were his words: “My Mom and Dad taught me, when I was really young, that we’re all given life. I wasn’t given a bad life or a good life. That was going to be up to me.” For the next 40 minutes, Ward told stories of how he spends his days helping children with disabilities. He created a doll called “Scarman” that he sends out to children from over 46 countries at no cost. The children draw their scars on the doll to make it like them, which then helps the children love themselves. We made our daughter her own “Scarman” at that conference. Ward was warm, inspiring, funny and exactly what I needed to hear at that moment in my life. After his talk, he greeted us by kicking his leg up in the air by his head while looking at us saying, “Betcha didn’t know I do that.” We had a short conversation where I thanked him for putting things in a funny way I could relate to. Months later, I received a call from Ward. He needed to talk to someone about comedy, and I was someone he knew who worked in comedy. Ward was recently confronted by a group of parents who were offended by some of the jokes that Ward told during one of his talks. This can happen in the disability community. Some parents have to fight so hard for their child so often that they forget to laugh. They forget to relax. I told him how important laughter is. I told him how he as able to lift me out of my “what’s it all about” nonsense through the power of humor, and I told him how I ultimately think you can reach more people with a laugh than a tear. Years have gone by since that conversation, and I now know the path for my daughter. Her path is simple: To live an awesome life. Her life. And she does it well. And now, I would like you to meet my friend, “Scarman.” We want to hear your story. Become a Mighty contributor here .

    Ted Houser

    My Life With Arthrogryposis Multiplex Congenita

    I have arthrogryposis multiplex congenita (AMC). I was born with clubfeet, flexed knees, flexed hips, flexed elbows, and wrists. I have a history of scoliosis which caused intractable pain resulting in the need for orthopedic surgery. Over the years I have had 17 surgeries and countless hours of physical therapy to help make me more mobile and ultimately have the opportunity to have long term employment. Due to my anterior horn cell disease and subsequent body changes, I do not have the strength, endurance, nor the pain management I had in my younger years. I now have limited tolerance for sitting, standing, and walking. There is no evidence in the literature that adults with arthrogryposis will get stronger or more mobile with age. One in 3,000 are affected by arthrogryposis and there are various versions of the condition. I believe the version I have is known as Esobar syndrome. I say “believe” because I have never been tested for it, but the symptoms are very similar to mine and that’s the conclusion my PT at Alfred I. DuPont Institute in Delaware has reached. Being a professional graphic/web designer I have created a site for others with AMC to help spread the word about the condition. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Welcomia.