Muscular Dystrophy

Hi Mighty Fam 👋
My name is Freddy, and I’m an artist living with muscular dystrophy and breathing challenges. Despite the obstacles I face daily, I’ve found purpose and strength through music.
I recently wrote a song called “Breathing is Everything” — inspired by my own health journey and the message that even when breath feels limited, our spirit can still be powerful. I created the song to inspire others living with chronic illness or respiratory conditions, and to remind us all how valuable each breath really is.
I’m new here and really grateful to be part of a community that understands these struggles. I’d love to connect with others who turn pain into purpose — and if it’s okay to share, here’s the music video:🎶 www.youtube.com/watch
Thanks for having me, and thank you all for being part of this beautiful space. Freddy

#MightyTogether #MuscularDystrophy

Hey everyone! I’m Kishan, just stepping into this new space. I have muscular dystrophy, but that’s just one part of my journey. Excited to meet amazing people and share great moments!

Hi, my name is Rocco_21. I'm here because I have been diagnosed with MD

#MightyTogether #MuscularDystrophy

About 4 years ago I was diagnosed with a very rare form of muscular dystrophy called oculopharyngeal, also known as OPMD. It’s a slowly progressive disease that initially affects your ability to swallow as well as the drooping of the eyelids. My eyelids were so bad that it affected my ability to see well. In October of 2023 I had surgery to correct that. Who knows how long that will last, but for now I'm super happy about the results! For the last year or so my hips and legs have become significantly weaker. It affects my ability to walk and be mobile. I have fallen a few times so now I use a rollator to move about my home. It keeps me mostly homebound and bed bound. It can be so very lonely. For someone who is a people person, this is very hard. I will say that I have a wonderful husband who takes great care of me, at times making me feel guilty and like I am a burden. I also struggle with fibromyalgia, ibs, hypothyroidism and incredible fatigue! #OPMD #ChronicFatigue #Fibromyalgia

Hi, my name is Brad aka mybeckersstory. I am a Canadian blogger and author living with Becker Muscular Dystrophy. Here to raise awareness and support others living with a rare disease.

#MightyTogether #MuscularDystrophy

Hey there, Keisha Greaves here! You know what? This year, 2024, I’ve decided to go full-on Katt Williams style. Yep, you heard that right. It’s time to spill some real tea on a few things that have been bugging me. We’re talking about the Muscular Dystrophy Association, hospitals not playing by the ADA rules, and the fashion industry’s blind spots. So, grab your favorite cup, and let’s get into it.

First up, let’s chat about the MDA. My journey as their National Ambassador was eye-opening, to say the least. I stepped in with hopes and ideas, eager to make things better for our community. But, oh boy, was I in for a surprise. Support groups, outings, help with medical supplies it seemed like these essentials were lost in a maze of research priorities and fundraising. Now, don’t get me wrong, research is vital, but what about the needs of today? I mean, it’s 2024, and we’re still waiting for that groundbreaking cure they’ve been talking about for ages.

Now, let’s switch gears to hospitals. ADA compliance sounds straightforward, right? Well, think again. Some hospitals still haven’t got the memo. Accessibility is a fundamental right, not an optional add-on. I’ve seen firsthand the struggles and frustrations from parking woes to navigating hallways and rooms not designed with wheelchairs in mind. It’s like a never-ending obstacle course, and frankly, it’s exhausting. It’s high time these hospitals stepped up their game and made real changes. After all, inclusivity should be at the heart of healthcare.

And then, there’s the world of fashion. Ah, fashion so glamorous, yet so out of touch. It’s 2024, and adaptive fashion is still struggling to find its rightful place in the mainstream. We’re here, we’re stylish, and we deserve fashion choices that reflect our diverse needs and personalities. Retailers, designers, listen up it’s not just about ramps and wide aisles; it’s about the clothes we wear and how we express ourselves. Let’s make fashion truly for everyone.

So, that’s my unfiltered take on these topics. But hey, this isn’t just about me venting. I want to know what you think. Got any specific tea you want me to spill? Anything you’re curious about or issues you want to bring into the spotlight? Drop a comment, send a message let’s turn this into a real conversation. Because when we start talking openly about these issues, that’s when real change begins. Let’s make 2024 the year we break down barriers and speak up for what really matters!