Duchenne Muscular Dystrophy

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    Miguel B
    Miguel B @miguel-b
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    What I Want Parents of Children With DMD to Know

    Dear parents of children with DMD, As a teen with Duchenne muscular dystrophy (DMD), I often get asked, “What happened to you?” People see my wheelchair and usually assume I got into an accident. I have to tell them nothing happened to me and that I have a muscle wasting disease. This means that over time, my muscles are getting weaker, and I might have a harder time doing the things I used to do. For example, one year I might be able to walk for 10 or 20 minutes, but the next I can only walk for five. The biggest thing I’ve learned is that this disease doesn’t define me, and I’m still able to do so many of the things I want to do . When I was younger, people just assumed I was a lazy kid. I fell over a lot , I didn’t run around or play sports, and I was tired all the time. One time when I was little, my mom brought me to her workplace and someone jokingly asked if I “worked out” because my calves were so big. Later, she realized that having enlarged calves and falling down were all early signs of DMD, but we didn’t know that at the time. Doctors told my mom I was probably just delayed in my physical development, and that some kids took longer to walk than others. Finally, at 5 years old, I was given the diagnosis of DMD. I didn’t really understand what my disease was until I was a little older. I just knew I went to the doctor’s office more than other kids. When I was ready, my mom told me more about my disease, how it would affect me, and why I had to take medication. DMD affects every person differently, and every time I go to the doctor they tell me I’m doing really well for my age. I get hopeful when I hear news about a clinical trial I can participate in, and my mom says there’s already been advancements, like the corticosteroids I take that help strengthen my muscles. Throughout my whole life, my mom has been nothing but supportive — even when I’m complaining or feeling negative about my disease. Every morning, she gets me out of my chair, gets me into the car, and drives me to school. At home, she makes sure I have everything I need, like a nice wheelchair, ramps, and equipment. I don’t just need help with the physical stuff, though — this disease has affected my mental health too. I’ve struggled with social anxiety because I get afraid of what people will say. Sometimes it’s been hard to make friends. I don’t talk to everyone at my school but have a great, small group of friends now. I’ll get sad when I think about living with this disease for the rest of my life, and sometimes wonder, “Why me?” It can feel overwhelming to  think about all the things I have to do that other teenagers don’t have to worry about. For a while I didn’t talk to my parents about how I was feeling, but I did open up to some of my friends at school. When I finally did let my parents know how much I was struggling, they got me help by making an appointment with a therapist. In my opinion, anyone who has any kind of issue should talk to a therapist. While it’s good to talk to your friends and family about how you feel, they don’t always know what to say. My therapist is a great person to talk to and gives helpful advice about what I’m going through. If you’re a parent with a child living with DMD, I want you to know the support you give matters too. Even though I’m the one living through it, I know DMD affects my whole family and that we have to navigate the good and bad days together. When it’s hard to live in the moment and I can’t stop worrying about my future, my parents remind me to focus on the good stuff happening in the present. Our lives are very busy, so that sometimes helps me stay present. I also like playing video games when I’m having a bad day, and it can be fun when we get to travel for clinical trials. We try to make it feel like a family vacation. It’s also important for parents to know the practical stuff too: like how to plan ahead when you want to travel or go to a restaurant, the fact that treatment for people with DMD can be different in a emergency setting, and some of the early signs to look out for, like enlarged calves and constantly falling. These are all things my mom wishes someone had told her sooner. There are also groups out there where you can connect with other families. Every time we go on an outing with other people living with DMD, we learn something new, and it makes us feel less alone. Talking with these families also reminds us of all the things people with DMD can do, like go to college or even have children. This disease affects everyone differently, and it gives me hope to see other people living with DMD. One last thing to remember is to give your child with DMD experiences growing up that are similar to others their age. Instead of focusing on all the things your child may have difficulty doing, try to focus on what they can do. And in the whirl of doctor’s appointments and treatments, don’t forget to ask them about their mental health. Even when things are going well, the reality of my condition can be scary, and it’s nice to know I’m getting supported emotionally too. I know I have a disease that’s going to affect me for the rest of my life, but I also know my life will be defined by so much more. To parents of children with DMD, remember your child is so much more than their diagnosis. This story has been shared on behalf of Miguel and his mother, Sandra. © 2022 PTC Therapeutics, Inc. All Rights Reserved. US-DMD-0286 06/22

    Community Voices

    my dream

    one i dream of that we will find a vaccine to duchenne muscular dystrophy , that our boys we live full long life.

    to see them get married finish school go on vacation be grandparents to be part of our community , and live

    life to fullest. that we appreciate what we have and greatful that we have been given today, not worry about

    tomorrow . i dream that one day we treat just like every one else with respect and love for who we are.

    i dream that we will make a difference, and be value for the people we are. i dream that we love our own

    music and celebrate our life, with any one telling we can’t . i just want to dream that there won’t

    be any more war or disease , just to live in peace. is that so hard to ask. why do have to put

    our slef down just because we dont look a certain way, or speak, look what they want to be.

    make fun of others who are different or have a disability , what make them so special.

    we are just the same as others. we love the same to. i just dream that one day we can just

    love and be in peace kimmy

    Sarah Eades

    Illuminating the Dark Side of Life With Chronic Illness

    Today, I am writing a blog post that I’ve been wanting to write for a while but have just been putting on the back burner. But, now is as good a time as any to finally share it with you. Often, when someone is diagnosed with a chronic illness, the symptoms develop unexpectedly. The shock of being healthy to all of a sudden being unwell, with having your life change overnight, can be overwhelming. People often go through a period of grief over a life that has forever been changed and a future with so much uncertainty. Life can often feel like it is out of control. My life was just starting to get back on track after my divorce and my recovery from my spinal cord injury was going amazing. I progressed from a wheelchair to a cane, to just a brace. “My life seemed to be perfect,” as I had thought, at one time. But, what is perfect? It’s weird how we do that when things are good. We will say, “Oh, this is perfect.” But it’s so perceptive to the time. Then, just like the track my life had been on, it came to a hurtling stop and crashed when I got diagnosed with multiple sclerosis. I had known there was something going on and I had this gut feeling that I had MS but, I kept telling myself that I didn’t and that I would be just fine. That it was just AA or CES or that I was tired. I had every emotion you can think of. I was happy because now I knew what was going on, pissed because I had worked so hard to get where I was with my spinal cord injury and I thought all my hard work was for nothing, and sad and lost because had I no idea what this disease was going to do to my body or what was going to happen next. All I knew was the worst of the worst about it and that I needed to be put on a disease-modifying drug for the rest of my life. After I found out, that day, I sat in my car alone for hours, not wanting to go home with all the things the doctor told me repeating in my head. I sat there, researching anything I could to help me gain an understanding of what I was going through. I found a support group and that was one of my saving graces — having people that were going through the same thing. As with a lot of people with chronic illnesses, it is hard to talk about what you are going through to other people in our lives. Sometimes, it’s because people just don’t understand what you’re going through or because sometimes it is nice to have someone else to talk to who is outside your immediate family. It’s also nice to just be part of a family that’s full of people just like you who are going through exactly the same thing. Where you can share your ups and downs. Your questions. Your good days and bad days. In this world, we can be ourselves, share the good, the bad, and the ugly with each other, and no one will judge one another because we have all been there. After you’re diagnosed with chronic illnesses, there are gonna be some bad days. When you’re diagnosed with a chronic illness, it usually isn’t pretty. You have to deal with a lot of difficult stuff. You have countless days where you have no energy, and face an ongoing fight with your body to keep it healthy. This is the dark side of our illness. This is the part we like to keep tucked away. Who wants to share about the bad days and the hard stuff? So, most of the time, we keep what’s going on with us close to the chest. Having a chronic illness can impact a person’s ability to live their lives the way they otherwise would. Chronic pain is commonly associated with chronic illnesses, as well as enduring fatigue. Even on days that aren’t overtaken by pain and chronic fatigue, we often have a limited amount of energy and reserve for the day. We have to be very careful in deciding what to spend our energy on. Every activity and task we do throughout our day will drain that energy. The truth is, most people aren’t privy to the daily struggles of someone with a chronic illness. Unless they are your family or you are very close to them, you will normally only see one side of their life. The side we show, naturally, tends to be on the better days. I tend to not go out much when I’m sick or even let others really know when I am. When we have better days, no one wants to focus on what their body is going through and the symptoms they are still experiencing. They just want to have a good day! I know I don’t. When I’m having a good day and my body isn’t fighting back with me, I want to make the most of it. I don’t talk about how I’m feeling or what’s been going on with my MS unless I am asked. Even then, I’d often downplay it because I didn’t want to make things about me or feel pity when I told them what was going on. I just want to have fun like everyone else. We all do, we don’t want to talk about the crap we have to live with all day long. We just want to enjoy ourselves and spend time with our friends and family. Instead, I choose to enjoy myself when I can and I look good while doing so! If you didn’t know me, you wouldn’t know that I had a chronic illness. Most chronic illnesses are invisible; there can be no instantly recognizable symptoms or signs of sickness. On the surface, we can look completely fine or just have something that slightly gives away our hidden struggles. But, otherwise, no one knows the battle we wage with our body day in and day out. This can be a double-edged sword for most people with chronic illnesses. We all like to look nice when we can. We all want to look good and “presentable.” I know if I can help it I don’t want to look like a hot mess. But, it can be incredibly frustrating or feel dismissive to hear people say, “You don’t look sick,” even if the sentiment is well-intentioned. But we are… Most of us have become used to ignoring ignorance, smiling through the pain, and getting on with it. On the days when this isn’t possible, you’ll find us at home, in bed, on our couches, and battling the monsters within. Resting, trying to regain the energy to get back to our lives. We have resigned to this reality in which we exist. This is this dark side of chronic illness which is not always easily shared or shown. But, to every dark side, there is a light side battling back, evening out the world we live in. Remember to look for the good through the bad. Soak in the good days and make the most of each moment.

    Community Voices

    I'm new here!

    Hi, my name is SEBASTIEN. I’m new to The Mighty and look forward to meet people who will help me with dealing with my son's DMD diagnosis

    #MightyTogether

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    Andrea Kurth

    Zac’s Mighty Wheels Features Boy With Duchenne Muscular Dystrophy

    I’ve been a special education teacher for 21 years, developing a passion for disabilities by growing up with my brother who has cri-du-chat syndrome. For 14 years, I taught students with moderate cognitive impairments and loved when I came across a book with disabilities I could share, but always wished the stories weren’t just about the disability. I also wanted to read them stories that could hold their attention but weren’t babyish, since I was teaching high school-age students. When I became a homebound teacher, teaching students with severe multiple impairments and who were immune-compromised, I got to work with Zac. Zac had been a legend at the school I had come from, known for his inappropriate mouth and charismatic personality. He had Duchenne muscular dystrophy and I went in not believing this condition would take his life. During the years I was teaching him, God put a desire in my heart to write a children’s book. My students weren’t represented in books often and I wanted to change that. I wanted to write a chapter book where the story was the focus, not the disability. I recruited the help of my son who was only 8 at the time, and we got to work on the story of “Zac’s Mighty Wheels and the Giant Problem.” It was a slow process with working full-time but the yearning to finish got very strong in 2020, four years after beginning the process. “Zac’s Mighty Wheels” became a story of Zac making a wish in a wishing well for the wheelchair of his dreams. Unfortunately, he was not the only one that found the wishing well that day and a giant bully emerges. With Zac’s super-wheelchair and the help of his friends, who also have disabilities, he saves the town from destruction. The story was published in April of 2020, just five months after the real-life Zac passed away. Although he never heard the finished story, I hope he’s looking down and proud of the legacy he left. 10% of profits go to Zac’s Duchenne Muscular Dystrophy Foundation. Book two of the series is being written now with plans of introducing new disabilities in each book. It’s important for people to see themselves represented in books, and others in the general education community to see people with all abilities as main characters who have a place in our communities. I’m hoping to fill that gap in the industry. “Zac’s Mighty Wheels and the Giant Problem” is available on Amazon.

    Community Voices

    Tired

    I’m not all sure how this works so I thought I’d just introduce myself first.
    My name is Matt and I’ve had multiple sclerosis for a very long time and for various reasons I have only ever taken one DMD and only for a short period of time. As usual I’m trying my best to give some information about my life and situation but don’t want to come across and needy or in search of sympathy but im sure you all understand and as usual only fellow MSers will understand anyone it.
    I have a habit of rambling on a bit 🙄😆 but when it starts to come out it really comes out. I was diagnosed with MS aged 40 but it appears I’ve very likely had since at least 19 when I was diagnosed with optic neuritis, I had no idea what that meant and neither did anyone else it seems but at least I was in blissful ignorance for the next 20 years and wasa fairly normal bodied person with the odd issue that I always blew off.
    Fast forward to the age of 34 and my wife passed from cancer which obviously had a huge impact on my then undiagnosed MS but as always happens I learned to live with it as much as I good and now I was left with two children to care for aged 34, I didn’t have a clue, I had given up my job six month earlier to look after my wife which ended up the best thing I could have done because we got to spend a solid six months together fully in every way and it was priceless.
    Then after a reasonably short time I met someone online and of course they lived across the pond in America. Ff again and I moved to the states and married this woman. Life just went on as we raised out respective kids together until I had my MS diagnosis and that’s when she decided she wanted a divorce Wichita was devastating to me as I had nothing, she was a successful lawyer and I was a handyman that couldn’t use his arm which was totally numb and stayed that way for 8 month and thank the lord I recovered most of its use back. I started to drive Uber lyft to make a living , my car got written off in a pretty bad accident and I also had health issues following it .
    Ff again and I met another lady who I absolutely worshiped but in known to me she was a meth addict who after about 4 years into our relationship she killed herself. Again I was devistated and I was also evicted from the apartment we lived in so now I was also homeless walking on a walker with nowhere to go. I’ve been living where I can ever since then in friends garages etc. I hope this doesn’t sound to whiny or needy I just get carried away and I guess this is a kind of Theropy.
    I’m trying to write this in stages so that I don’t repeat myself which is always a possibility.
    I get terrible (cogfog) as I call it and can completely forget what’s going on or been said I’m not even sure this post will make any sense and I’m also sure I’ve probably missed things but there ya go, that’s me.
    Hi everyone, it’s nice to meet you all and I hope this post is ok🙏
    #MultipleSclerosis

    4 people are talking about this

    The First Time My Son With Muscular Dystrophy Used a Wheelchair

    That day. That day that has been in the back of my mind ever since my boys were diagnosed with muscular dystrophy is here. This morning, my son took his wheelchair to school for the first time, as walking the long corridors in school is getting too hard for him and draining his energy. Ever since their diagnoses, even from that very first day, for some reason the “he will have to use a wheelchair full time” sentence has always been portrayed as some sort of defining point in this process and progress of his disease. Usually, it’s a topic that is very lightly talked around in conversations, and always viewed from every point of view as a negative. Why is that? Him getting to conserve his energy, lessen the risk of falling, making him more independent in getting to and from the places he wants to go to. It is actually quite sad that from the day a parent is told of such a diagnosis, nothing is ever viewed in a positive light. Yes, he will need to use a wheelchair, but you know what, nowadays there are very good wheelchairs, and they even look cool. It will make him more independent, help him navigate society and be his own person. There is lots of other equipment that he might get to help him do the things that are hard, so yes, it will be a little hassle to figure everything out, but it should be fine. Not one professional has ever talked to us about the future in a positive light. Not a single one. Ever. And that is a problem in and of itself. We must stop viewing wheelchairs and being in one as a negative thing. It is not. Yes, it is different than what most people use to get around. But it is not worse. I want to quote a great article I read once, A Primer Against Ableism for the Duchenne Parent Community: “Walking is not better than rolling!”

    Community Voices

    Parenting Child with Duchenne(DMD)

    I am not the best about putting my thoughts and feelings into words. I am really hoping to gather input from other parents facing the same thoughts, fears, jealousies, concerns and even joys of those parenting a child with DMD.  
    As I am on this journey there are many times I feel guilty and upset with myself for having these thoughts and feelings.  I guess I want to see if I'm alone or others are also thinking and feeling the same.

    A Wheelchair Isn't a Bad Thing

    Why is it that so many of us as parents feel sad, and even describe it as heart-breaking to learn that our child will end up in a wheelchair? It has now been more than eight years since both my sons were diagnosed with Duchenne muscular dystrophy, Duchenne is a progressive muscle wasting disease that affects every muscle in the body. Boys with Duchenne usually need a wheelchair full time from the age of 8-13 years old, this is very different for each boy. At the time, in August 2012, my sons were 1 and 2 years old. They would celebrate their 2nd and 3rd birthdays the following October and September. The way we were told the diagnoses portrayed a wheelchair as a very sad and bad thing. They didn’t get the diagnoses on the same day. Our older boy was diagnosed first, and in that doctor’s appointment, at the very same time we are being told our son had this incurable disease, the doctor informs us this is something that can be screened for during pregnancy. I didn’t think anything more of it at the time, but as more time passed, I get angrier and angrier that this was something the doctor felt was necessary to inform us of at that very moment. What was the motive? Some sort of “Don’t worry, you can still try and get a ‘better’ child, a ‘non-defective’ one?” In the past eight years, I have learned a lot. I think that some people might look at me as being in denial, because I do not feel sorry for my boys. This is just the way life is for them, and it is our job as their parents to never let them feel like they are any less of a person because they have a disability. I have often wondered, why it is that we feel sad knowing our child or someone we love will need a wheelchair? Could it be that deep down we know how inaccessible society is for someone that needs a wheelchair and assistance in everyday life? Might it be that we know how much we will have to fight for them to get the same basic human rights as every other child their age? That somehow we know how unequally we treat disabled persons in our society? I think this is something that is worthy of discussion and thought. We tend to feel sorry for disabled people, but who benefits from that? Certainly not the disabled person, not our society, not ourselves. I think we would better spend that energy voicing what is wrong in the structure of society that puts the disabled person in the situation that makes us feel sorry for them. This situation is something man made, and therefore not permanent and unchangeable. Everyone would benefit more if we stopped feeling sorry for disabled people and instead tried to be more inclusive.

    Community Voices

    Ladies, there is a certain person asking to be directly messaged. If any of you accepted a new friend Christmas eve or Christmas
    Check background!

    I hate to do this and I could be totally wrong, debated a while about posting this.

    I'm trying to keep it vague enough..but we just had a convo about this type of thing and I think I may have given a scammer ideas with my response to a post and I am concerned.

    If a guy (or gal for that matter) is posting and asking to be privately messaged because of the sensitivity if the subject... check them out.
    They may have done some response posts & have some disorder hashtags, but when I DMd like asked instead of duscussing the sensitive topic, they wanted advice on by DM, it was Hello Friend & how are you? Instead of taking a sensitive subject out of public eye.
    I looked their history and it ono ÷ļwell designed lure (if it is one) but please DM me so I can give a name.

    #becareful
    #scammeralert

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