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    Community Voices

    Has anyone ever minimized your experience with your illness, just because they thought it was "cool" or "quirky?"

    <p>Has anyone ever minimized your experience with your illness, just because they thought it was "cool" or "quirky?"</p>
    12 people are talking about this
    Community Voices

    How are you honoring Rare Disease Day?

    <p>How are you honoring <a href="https://themighty.com/topic/rare-disease/?label=Rare Disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="Rare Disease" title="Rare Disease" target="_blank">Rare Disease</a> Day?</p>
    2 people are talking about this

    Why and How I Cook With a Seizure Disorder

    As a person with a disability, I try to busy myself with hobbies and passions. With hemophilia, my most daring passion is to pursue peak physical fitness. For my seizure disorder, I also chase after a skill that many might consider taboo — cooking. I love food and I love eating — it’s always been an important part of my life. All the relevant male figures in my life are proficient cooks, and I wanted to follow suit. And it gladdens me to know that my family believes I have a talent for it. I usually dive into Japanese, Italian, Chinese, and Thai cuisines — with the occasional mix of Middle Eastern. But this is not an essay on what to cook. This is my primer on how I do it despite possibly losing consciousness any time of the day — God forbid while holding a hot stove or a knife. I understand the risks of cooking, and it would be highly foolish of me to disregard all the risks involved. This is why I try to minimize them as much as possible. I’m pretty stubborn, but I personally find it necessary to pursue these things for my mental health. Why— I do it for my family. As a person with a disability, I often feel like I need to do more than what’s expected for my family. I feel like I have to do it to make up whenever I drag them down with my illness. I’ve already developed a reputation in my household as an able cook. So I simply owned it and made nourishing dishes for my family. It also helps me feel that I’m of service to others. I do it for my mental health. Cooking has become a relaxing escape for me from the struggles of everyday life. To be able to do something I enjoy, and create things that are beneficial eases my mental health. It gives me inner peace. I find it hard to feel productive, especially due to my illnesses. And preparing meals makes me feel that I’m of use. It helps me feel empowered. As a person with a disability, it’s a powerful emotion to feel productive and capable. Being able to work around and beyond your capabilities reassures one that even if they may seem “incomplete,” they can still have a semblance of “completeness.” Cooking a meal may sound simple, or even shallow for some, but for a person who is supposedly denied the possibility to cook, it’s encouraging to be able to pursue it. It gives my life more meaning. Being able to pursue cooking even with a seizure disorder helps me learn a valuable lesson when it comes to living with a disability. So far, it’s taught me how to live with my illness instead of against it. Given that I possess complex medical conditions, the possibility of recovering is quite slim. But being able to do these activities or passions allows me to cooperate with my illness and see it as a companion, rather than a nemesis. How— I don’t go it alone. I’m lucky in this aspect that I’m with my wife and we have a nanny for our baby. I don’t ever want to risk cooking alone since seizures are unpredictable. Having a companion guarantees that someone will be able to help you out of a dangerous, potentially deadline situation. I have a plan ready in case of the worst. Make a list of the things you need to keep in mind and implement as you go. Think things through, from how you will organize the workspace down to how you will prepare your ingredients. Is the area safe in case you have an attack? Is there a chair you can possibly sit at the onset of your aura? Aside from having a recipe on hand, minimize the risk of accidents by planning ahead and learning how to work around and with your illness in creative ways. I try to be mindful of my seizure triggers and aura. It’s absolutely essential for anyone with a seizure disorder to be familiar with the nature of their attacks. In my case, my seizures are caused by emotional stress. And a common aura — the feeling you have before a seizure actually happens — is a feeling of dejá vu. I try to avoid cooking when I’m in distress or when I have uneasy feelings or strange visions. These are signs that I’ll most likely have a seizure within the day. I minimize the use of dangerous tools. The kitchen is one of the more dangerous rooms in the house. Why wouldn’t it be? It’s a room with knives, heated pots and pans, and fire. Knowing that it’s dangerous, minimize the use of the things that make it so. I ask my companion to slice, chop, or dice vegetables and meats for me and I’m not hands-on with a stove. Again, the key is minimizing risk and managing the situation to work for you. I try to be a manager/supervisor rather than a chef. Similar to how a head chef works in a restaurant, more often than not I don’t do the actual cooking. I do, however, manage my surroundings and instruct or advise my sous chef/s on what they have to do. I guide them on how they can make a meal turn out great. You may not be on the frontline, but you’re the one pulling the strings in the kitchen. It’s a healthier use of your skill on multiple levels. One, it keeps you safe; two, you’re able to share and apply your knowledge and skills to others; three, you’re still able to pursue your passion; and lastly, you’re not simply productive, but you’re participating in the growth of other people. It may not be ideal for people wanting action, but that’s the point of respecting one’s limitations. You, otherwise, put yourself and others at risk if you try to work against your condition and place yourself in a tough spot. The most empowering thing you can do to express yourself as a person with a disability is not challenging limitations. It’s the ability to learn to live and co-exist with limitations that’s truly inspiring. It’s an image of peace, acceptance, and transcendence — not struggle, pain, and resistance.

    Community Voices

    Teaching Self Reliance to My Child Early with Intention

    I’ve played multiple roles across my life. I’ve been son, student, PWD and advocate. Above all are my roles as father and spouse. My family plays a key role in my life. They’re my source of inspiration, strength and they’re the reason I’m here now. I can only imagine a more desolate, lonely life without them. My wife’s central to why I’ve been learning how to be independent for years now. And I intend to pass this down to my daughter by teaching her self-reliance and how to life a life with wonder, empathy and compassion.

    I was coddled as a child—and it’s simple to understand why. I have severe hemophilia and I currently suffer from a seizure disorder. Being born unlike others, I was shielded from the terrors of life in exchange for a convenient life in an inconvenient situation. The fact that life’s too troublesome already for a PWD is why they should be trained early on. She deserves to have a life that she knows how to navigate, with a headstrong spirit and a soft heart. And I don’t intend to pass down the curse of ignorance to her so young.

    Being a burden to others has always haunted me. It’s not just because I’m disabled but also because I have difficulty fending for myself. I support self-love but with a disability inconveniencing others, self-hate frequently seems like the more convenient option. I’ll never be enough for my daughter—what father is? But I can’t help but feel disadvantaged. I don’t want to repeat the history I have with my own family. I’ve always felt shame for being the family’s curse or black sheep. And I refuse to pass that along to my wife and daughter. Which is why early on, I want my daughter to have the experience needed to explore the world without daddy having to hold her hand.

    I’m not doing this to relieve myself of the responsibilities of parenthood. In fact, it’s excruciatingly painful for me to have to let go of my little girl. However tragic, it’s an essential expression of unconditional love. I don’t want to burden her and hold her back. I don’t want to be that Filipino parent who reduces their child to an insurance plan. I intend to learn to be self-reliant as well so my family need not worry about me anymore.

    I only hope the example I set will be enough for her to pursue self-reliance as well. And I sincerely hope that having a disabled father softens her heart for others facing adversity. She’ll grow with a perspective unlike others and I’d like to stay optimistic that she’ll have a kind soul because of it.

    We’re pretty tough as parents. Many parents might think we’re harsh on our daughter. Some even said that we’re OA—Over-Acting or overdoing it—but she needs it. She’s two going into three and already we urge her to do things on her own. She dresses up all by herself, and she’s completely potty-trained. She also cleans up after herself and she knows when to ask for help—which is quite infrequent. It’s funny to watch a kid go to the bathroom, asks you to step out and closes the door behind her—yet fail to wash her own butt after she does number 2.

    She’s very self-assured and independent and I hope it stays that way. Sometimes, I worry we might actually be too harsh; though it’s gladdening to still hear her call out “daddy!” and still demand snuggles at night. She actually has her own bed, but I’d still ocassionally wake up and see her tucked right beside me. These tiny days of unconditional love run by fast and it’s great to savour them. She’ll eventually grow up, have a mind of her own and set out for the world. We only hope we remain consistent so she can be that kind, confident soul we hope her to be.

    We all have to let go. I don’t want my daughter to need me, I don’t want to hold her back and I don’t want her to feel obligated to take care of me. I know I’ve done my job well if at the end of the day, she and I can let each other go and she can tell me “Daddy, thank you for raising me. Be confident and know that I’ll be okay.” as I bid her farewell as she moves on lives her life.

    Community Voices

    What matters most in your rare condition?

    <p>What matters most in your rare condition?</p>
    2 people are talking about this

    After a Year of Lockdowns, What We Can Learn From Chronic Conditions

    World Hemophilia Day, observed on April 17, serves as a reminder to all of us that we must adapt to health challenges and other life setbacks, including those brought on by the COVID-19 pandemic. During the past year’s lockdowns, Americans got a taste of what it’s like to live with a chronic disease — in the sense that our daily lives and movements have been limited or restricted by something outside our control. Now, with the vaccine rollout and the U.S. beginning to open up, those limitations are slowly being removed — but not fully for those of us with chronic diseases like hemophilia. Like the rest of the population, those of us with hemophilia will soon be able to get a haircut, go to a restaurant with friends or see a movie. Many of us will plan vacations for the first time in a year, and look forward to packing their bags for exotic destinations. For those with a bleeding disorder, traveling will still be hard, as a bleed can happen at any time. As a result, we’ll have to pack our vials of factor medicine, diluent, reconstitution device, syringes, disinfectant and containers, and make sure we have a travel letter that helps smooth our passage with these items through airport security. We’ll need to ensure we wear our MedicAlert bracelets, and that we’ve pre-researched a list of hospitals at our destination in case we have an unexpected bleed that leads to a medical emergency. The hemophilia community has faced many setbacks in recent decades, most notably the contaminated blood crisis of the 1980’s and 90’s when people contracted AIDS and hepatitis C through transfusions from tainted blood products. Even with the advances in care of the last 50 years, maintaining our health remains a challenge. How have we continued to rebound after so much adversity? We’ve developed tools for living to carry us through our darkest moments. I believe the following four strategies can help anyone facing a debilitating chronic condition, or the challenges of the COVID-19 pandemic — be it feelings of isolation, depression or health fears. 1. Use your imagination and creativity My childhood was filled with bleeds, lengthy hospital stays and recuperation periods of isolation, leading to loneliness and even depression. I turned to my imagination to fight suffering. My passion for Dungeons & Dragons (D&D), the popular role-playing game, enabled me to escape into magical worlds and travel on epic adventures to exotic locations to complete amazing quests in worlds filled with knights, wizards, orcs and dragons. As I grew up, I continued to refine my creative process, earned a Master’s in Religious Studies and ultimately wrote and published a graphic novel about my life. My mentor, Val Bias, longtime CEO of the National Hemophilia Foundation and my counselor at summer camp for kids with bleeding disorders, often spent his entire summer in the hospital as a youth — getting out just in time for school to begin again. Val immersed himself in TV shows about exploring the galaxy and delved into the intricacies of chess and checkers. His grandmother taught him how to iron and to sew, which has remained part of his creative expression to this day. Find a creative outlet that interests you and immerse yourself in it, be it art, gardening, cooking or music it is an excellent way to escape or drown out the pain and loneliness you are experiencing. 2. Create a support team One of the most valuable resources for me has been a trusted support team of friends, mentors, family and medical professionals — a team I share my struggles with and who help advocate for me when I can’t. D&D helped me create a support team of friends whom I brought into my confidence at a young age. As a teen, I was forced to confront my HIV positive status in 1984 after being exposed to the AIDS virus from contaminated doses of factor concentrate used to treat my hemophilia. At this same time, Ryan White, a teen boy with hemophilia, whose AIDS status became publicly known, was experiencing horrible discrimination. Ryan and his family fought to educate the general public and secure his right to attend school. Through witnessing Ryan’s bravery, I decided to share my HIV status with a friend at a sleepover after a D&D game session. Disclosing my HIV status only made the friendship stronger. My D&D friends remained part of my support team through each challenge I encountered — from hemophilia to HIV/AIDS, hepatitis C, liver disease and ultimately a liver transplant. Connect with the people around you — your friends and loved ones and those you trust — to form your support team. Educate them about your situation, share your experiences and challenges and ask for their support. 3. Don’t let a disease or a setback define you Take control of your situation and decide what is best for you. In my hemophilia journey, this has meant becoming my own medical advocate. Doctors and other medical professionals are important members, but in the end, I must lead the team. While it’s easy to let your doctor decide how to treat your condition, you are the one who must live with those decisions and you need to participate in the process. You must educate yourself on your own situation, be it medical challenges, options for treatment and management — and then you must advocate for the course you want to take. I have found much of the strength needed to become my own advocate in the lessons of Val, who counseled me and the other kids at bleeding disorder camp to not let hemophilia define us. Instead, he said, “express your true character in the way you choose to face and overcome hemophilia’s obstacles.” 4. Put one foot in front of the other and you’ll eventually reach the summit My father always told me this growing up, encouraging me to keep moving forward. For Val, coping meant experiencing a bleeding episode or a long rehabilitation and pressing on — just like a basketball player who misses a shot, but keeps shooting without allowing fear to control the path of the next shot. Having that single-minded, focused approach can make you successful at achieving your dreams. Whether you are facing a chronic condition, navigating your own or a loved one’s medical odyssey, or dealing with the loneliness of the pandemic, you have the tools and the power within you to face any challenge. Even as COVID-19 vaccination efforts gather speed and life promises a return to “normal,” we must not lose sight of the need to address the struggles caused by chronic illnesses, such as hemophilia. Just as we must continue to invest in chronic and infectious disease research and ensure we have adequate vaccines to address COVID-19 or any potential future health threat, we also must continue our quest to overcome the obstacles of hemophilia with increased research and treatment options. About Jonathan Hill:Jonathan Hill was born in 1969 and diagnosed with severe hemophilia A in 1972. In the 1980s, Jonathan learned that he had been infected with hepatitis C and HIV from contaminated blood products. Later, he developed severe liver disease, undergoing a liver transplant in 2017. For several years before his transplant, Jonathan sought a creative outlet, writing about his experiences on Facebook. The response was huge. Family and friends shared how his posts helped them better identify with the struggles of people with rare diseases. Over time, he compiled his writing into a memoir, “Blood Brothers: A Memoir from the Lost Generation of Hemophiliacs.” After a meeting at the National Hemophilia Foundation (NHF) 2019 Bleeding Disorders Conference, Jonathan partnered with BioMarin and Believe Limited to create a graphic novel illustrating his journey. About Val Bias:From 2008 through 2019, Val Bias, who also lives with hemophilia, led the National Hemophilia Foundation to the forefront of the healthcare reform debate on such issues as the elimination of lifetime caps and pre-existing conditions with insurers. In addition, he greatly expanded the NHF’s research agenda and created the Women’s Health and Bleeding Disorders Institute to address the growing needs for awareness and treatment for women with bleeding disorders. Before becoming CEO, Bias maintained a long history with the National Hemophilia Foundation from his service as NHF’s Board Chair in 1992 to his tenure as volunteer, consultant and lobbyist/advocate for NHF — culminating with the passage of the Ricky Ray Hemophilia Relief Act of 1998. He has interfaced with key decision makers in executive and legislative branches of federal government and has long-standing working relationships with such federal agencies as the CDC, NIH and FDA.

    Community Voices

    After a year of lockdowns, what we can learn from hemophilia

    <p>After a year of lockdowns, what we can learn from <a href="https://themighty.com/topic/hemophilia/?label=hemophilia" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce8700553f33fe993fc0" data-name="hemophilia" title="hemophilia" target="_blank">hemophilia</a></p>
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    Community Voices

    World Mental Health Day documentary + panel 💥

    <p>World <a href="https://themighty.com/topic/mental-health/?label=Mental Health" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5800553f33fe98c3a3" data-name="Mental Health" title="Mental Health" target="_blank">Mental Health</a> Day documentary + panel 💥</p>

    Let's Talk Documentary Inspired By Paul Newman's Camp for Sick Kids

    Paul Newman was my idol as a kid, and not because I could quote Cool Hand Luke or cared about his fabled blue eyes, but rather because he was the guy on the pasta sauce and popcorn bag who made my summer camp possible. Then, when I went to acting school and discovered his work in film, I fell in love with him all over again. Wow, how could this guy be this talented and this good, I thought. Who is this guy? I was fortunate to meet that guy on three separate occasions towards the end of his life. Each time, we spoke about the importance of a summer camp experience for children with serious illness. One time, he referred to his rapidly-growing network of camps as “mushrooms sprouting in an open field.” He also exclaimed that I and other campers-turned-counselors were a real “kick in the pants!” 20-year-old me did my best to stay composed as this cultural icon was excitedly dropping Midwestern colloquialisms on me. The “kick in the pants” time really stands out in my memory too, as it was the same occasion where I met his wife, Joanne Woodward. Paul met Joanne, his wife for what would be 50 years, at the Music Box Theatre in Manhattan, the same one I was working in on the day Paul passed away in 2008. Following the curtain call, one of the cast members stepped forward, announced his death, and shared with the audience what special history the Music Box Theatre had in Paul and Joanne’s story. I left work that day in a daze. I was so sad to know Paul was gone. I was also so grateful for our multiple meaningful encounters, but there was also a distinct sense in me that there was something more important taking place than simply my emotional processing. There was a sense that a torch had fallen, without anyone in particular in charge of picking it back up. As I walked home through what felt like an even extra hellhole-ish Times Square that night, I wondered about who would follow in Paul’s footsteps. Which actors and artists would step up to fill the tremendous philanthropic and humanitarian void left behind by this entertainment titan with a heart of gold? I thought about camp and about how many of the most important experiences of my life were made possible by him. I thought about the counselors who, with only five days each year, did so much to make me feel loved, accepted, and “normal” in spite of having hemophilia, a life-threatening bleeding disorder. I wasn’t going to be able to pick up Paul’s torch, but maybe I could use my storytelling and professional talents to help de-stigmatize and normalize chronic illness for children in my own way, just like Paul did for me. My sense of responsibility changed the day Paul Newman died — responsibility as an artist, as an adult, and as a beneficiary of tremendous vision and commitment. While I couldn’t have possibly predicted that it would someday lead to producing a film about mental illness and chronic blood disorders, there’s no denying that Let’s Talk is a direct descendant of my relationship to Paul Newman and the impact his humanitarianism had on my life as a kid with severe hemophilia. He taught me the importance of normalizing the lived experiences of people with serious illnesses, especially children, and of using one’s platform and opportunities to do good for others. Watching a film and attending one talkback is not the be-all-end of addressing mental health challenges, but it is a door-opener into many different, difficult conversations, which is exactly what Let’s Talk is intended to be a door-opener and conversation-starter. The 40-minute film features stories and struggles from five people affected by chronic blood disorders, and covers a wide range of challenges and experiences. I believe in the power of storytelling and the need to amplify the stories most relevant for our times. It’s my hope that anyone who watches Let’s Talk will resonate with at least one of the characters and storylines shared. I believe attendees will leave the film and talkback having gained just a little more insight into their own mental health and with just a bit more confidence to take whatever their next steps may be. I like to think Paul would be proud.

    Community Voices

    Am I being too sensitive for feeling hurt by a group of friends who have neglected me because my surgeries/illnesses keep holding me back? #ChronicIllness #Friendship #inmyfeelings

    I have recently been diagnosed with Lupus, osteoarthritis & Hemophilia & within the past 10 months, had both of my hips totally replaced, right shoulder replaced, and now the other shoulder and both knees will be going soon, due to Avascular Necrosis from the chronic steroids I have been on. During those 10 months, I gained/lost 75lbs d/t steroids as well. It has been hell. The group my bf of 7 years and I were very close to prior to this have completely cut me out, never texted once,called, wished me luck. I feel like a lonely, dramatic loser, but I’m extremely hurt. Am I overroverreacting?

    4 people are talking about this