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Hi, my name is Huhuhu. I'm here because i have hemophilia and chronic pain
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Has anyone ever minimized your experience with your illness, just because they thought it was "cool" or "quirky?"
For instance, as someone with Ehlers-Danlos Syndrome, I get asked to perform party tricks that demonstrate my hypermobility. Little do the people asking me to perform those tricks know that EDS also comes with a bevy of co-morbidities, immense pain, fatigue, and countless hours of physical therapy and doctors’ appointments.
So, Mighty community, please share in what ways people have diminished your actual experience with your disease or illness, just because they made assumptions based on your appearance, the party tricks you can do, or a “weird” or “inspirational” story they read online about someone else with your condition.
Your answer may be used in a Mighty story!
#RareDisease #CheckInWithMe #ChronicIllness #ChronicPain #Disability #MentalHealth #TheBendyBunch #EhlersDanlosSyndrome #CysticFibrosis #SpinaBifida #Cancer #KlinefelterSyndrome #AcousticNeuroma #Hemophilia #SUNCTHeadache
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How are you honoring Rare Disease Day?
Rare Disease Day is a global campaign which aims toward equity in social opportunity, health care, and access to diagnosis and therapies for people living with rare disease.
In honor of Rare Disease Day, we’re here to spread some resources and support to anyone living or who loves someone with a rare disease.
📚 About Rare Disease Day: www.rarediseaseday.org
From The Mighty community:
🦓 Rare Weekly Newsletter: bit.ly/3ATKqgm
📍 Living With Rare Disease Group: bit.ly/3snIgTu
From our partner:
🤝 National Organization for Rare Disorders (NORD): rarediseases.org
#RareDisease #RareDiseaseDay #ChronicIllness #ChronicPain #MightyTogether #EhlersDanlosSyndrome #CysticFibrosis #SpinaBifida #Cancer #KlinefelterSyndrome #AcousticNeuroma #Hemophilia #SUNCTHeadache #SickleCellDisease
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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.
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What matters most in your rare condition?
Learn more here and share your answers here: bit.ly/3AE7zC6
#RareDisease #Rare #MyastheniaGravis #CysticFibrosis #autoimmune #SickleCellAnemia #SickleCellDisease #Hemophilia #HunterSyndrome #HurlerSyndrome #GeneticDisorders
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After a year of lockdowns, what we can learn from hemophilia
World Hemophilia Day serves as a reminder to all of us that we must adapt to health challenges, 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 have been limited by something outside our control. Now, with 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, we will soon plan vacations for the first time in a year. For those with a bleeding disorder, traveling will still be hard, as a bleed can happen at any time. The hemophilia community has faced many setbacks, most notably the contaminated blood crisis of the 1980-90s when people contracted AIDS and hepatitis C through transfusions from tainted blood products.
How have we continued to rebound after so much adversity? I believe four strategies can help anyone facing a chronic condition, or the challenges of the pandemic.
1. Use your imagination and creativity. My childhood was filled with bleeds, hospital stays and recuperation periods, leading to loneliness and even depression. I turned to my imagination to fight suffering. My passion for Dungeons & Dragons, the popular role-playing game, enabled me to escape into magical worlds. As I grew up, I continued to refine my creative process, and ultimately wrote a graphic novel about my life. My mentor, Val Bias, longtime CEO of the NHF and my counselor at camp, often spent his entire summer in the hospital as a youth. Val immersed himself in TV shows and delved into the intricacies of chess and checkers. Find a creative outlet that interests you and immerse yourself in it to escape pain and loneliness.
2. Create a support team. One of the most valuable resources for me has been a trusted support team of friends, family and medical professionals. As a teen, I was forced to confront my HIV+ status after being exposed to the AIDS virus from contaminated doses of factor concentrate used to treat my hemophilia. I decided to share my HIV status with a friend who 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 to form your support team.
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, but in the end, I must lead the team. I have found much of the strength needed in the lessons of Val, who counseled me to not let hemophilia define me.
4. Put one foot in front of the other and you’ll eventually reach the summit. My father always told me this, encouraging me to keep moving forward. You have the tools and the power within you to face any challenge.
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World Mental Health Day documentary + panel 💥
Hi, Mighties!
Need plans tonight? There’s a free documentary premiering at 4pm PT / 7pm ET called “Let’s Talk.” It tells the story of five individuals who live with bleeding disorders and the effect their conditions have had on their mental health.
After the documentary (which will stream on Facebook), there will be a live talkback panel. I’ll be chatting about The Mighty and my experience with illness and mental health as well.
Details and RSVP here:
#Hemophilia #RareBloodDisorder #ChronicIllness #RareDisease #MentalHealth #Depression #Anxiety
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