Muscular Dystrophy

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!

Hi, my name is Medicrn4814. I'm here because I have Limb Girdle Muscular Dystrophy, cluster migraines since age 17, severe degenerative arthritis, stenosis, CAD, COPD, and my snapping just cost me my best friend. My wife and I have been married 34 yrs, 3 children , 8 grandchildren. I'm a nurse, firefighter, paramedic, and Type A personality. I snapped a few times at my best friend and his wife and they have told me to go away. I am devastated, I have apologized profusely, but I want to give some explanation for my actions. I live in constant pain at a 6-7 out of 10. 14 major surgeries and i take 25 meds/day. What can I say to them to help them understand my stupidity.

#MightyTogether #Migraine #MuscularDystrophy

Hey everyone!

I’ve got some serious love to share today. Let’s talk about Sarepeta Therapeutics, straight out of the awesome city of Cambridge, Massachusetts. These incredible folks have been a true-blue supporter, always there, always believing. And oh boy, they’ve got a special place in my heart.

**Believing in Dreams**

So, let’s rewind a bit. I’m Keisha Greaves, the brains and heart behind Girls Chronically Rock, Trust Your Abilities, and GCR Adaptive Project. Now, making these dreams a reality isn’t a solo act. It takes a village, and Sarepeta Therapeutics has been a crucial part of my village.

**Funding Magic**

Sarepeta Therapeutics didn’t just nod in agreement from the sidelines. No, no. They threw their weight behind my non-profits, Trust Your Abilities and GCR Adaptive Project, by granting us funds. That’s not just financial support; that’s belief turned into action.

**Champions for Muscular Dystrophy**

Now, here’s the thing that makes them superheroes in my book. Sarepeta Therapeutics isn’t just about Keisha and her dreams. They are champions for the Muscular Dystrophy Community, especially those rocking Limb-Girdle Muscular Dystrophy. They’ve got our backs!

**Memories to Cherish**

Let me take you down memory lane. Picture this: the Limb-Girdle Muscular Dystrophy launch. Sarepeta Therapeutics didn’t just throw a party; they invited me and others to join in. We had a blast, from the launch shenanigans to a kick-ass photo shoot. Those moments are etched in my memory, and they’re a testament to the incredible community spirit these guys bring.

**Forever #1 in My Eyes**

So, here’s a big shoutout to Sarepeta Therapeutics. You’re not just a company; you’re family. For believing in me, for supporting my non-profits, and for being a rock for the Muscular Dystrophy Community, you’re forever #1 in my eyes.

To Sarepeta Therapeutics: You rock , and I can’t wait for more adventures together!

Cheers,
Keisha Greaves
Girls Chronically Rock