Shows
Multispective041 From Muscles to Bones: An Unstoppable Genetic DisorderSend us a textIn this episode, we explore the story of Joe Sooch, who shares his heartbreaking story of living with a rare condition called "Fibrodysplasia Ossificans Progressiva" (FOP), where the body’s muscles slowly and progressively turn into bones. In contrast to our previous episodes this time it's impossible to overcome this condition but still Joe offers a glimpse into his extraordinary life, showcasing unwavering strength in the face of adversity. We delve deep into this story from what it means medically, all the complications that come with FOP, and his general view on life; hi...2024-01-151h 01
Two Disabled Dudes231 - Speak Up, Stand Out: Silence is Not AdvocacyIn this conversation, Sean and Kyle discuss the concept of advocacy and its various forms. They reflect on their experiences with advocacy, from meeting with legislators for rare disease-related issues to everyday interactions. They emphasize the importance of not staying silent and making one's voice heard, whether it's through legislative meetings, social media, or personal interactions. They also acknowledge the power of raising awareness and challenging perceptions of disability by expressing yourself in whatever way you choose.Links & ResourcesRegister Today: Friedreich's ataxia News Virtual Event, Nov 1Watch: Joe Sooch's YouTube Channel T...2023-10-1631 min
The See-Through PodcastThe Clickbait Bait: Mr. Beast + TransableismEpisode 084 | In this episode, Lance talks about the "click-baity" nature of content creation and how it fueled anger towards Mr. Beast. Lance also dives deep into some negative comments that he has received online and discusses how disability centered content is surprisingly polarizing, even when it's not intended to be. Lance also gives his personal take on "transableism" and much more! ------------------------- SUPPORT: Merch: https://seethroughpod.com/merch Patreon: https://patreon.com/seethroughpod ------------------------- ARTICLES DISCUSSED: - https://transid.fandom.com/wiki/Transabled - https...2023-03-0544 minThe See-Through PodcastJoe Sooch (Man Turning Into Stone)Episode 079 | Joe Sooch (YouTuber) joins the podcast! In this episode, Lance and Joe discuss the ultra rare disease Fibrodysplasia Ossificans Progressiva (FOP) that is causing Joe's muscles, tendons, and ligaments to turn into bones. They also discuss the "elite" mentality the drives Joe's YouTube channel, his struggles to find companionship as a disabled man, his mental health issues, and his "hot take" perspectives on the disability community. ------------------------- SUPPORT SEE-THROUGH: Merch: https://seethroughpod.com/merch Patreon: https://patreon.com/seethroughpod ------------------------- JOE SOOCH LINKS: YouTube...2022-12-111h 26
Two Disabled Dudes203 - Reason vs Excuse: It's Up To YouThere's a common debate going on in many of our heads when it comes to committments. Whether it's meeting a friend for coffee, or going to a concert with a group, we have to decide if we can make it. If we decide not to go or even worse, cancel at the last minute, is it for a legit reason or are we just making an excuse? Ultimately that's for you to decide for yourself... Resources mentioned in this episode: Intro post for Sean's column: No Good Excuse 2DD episode 178 - Man Turning Into Stone - Joe...2022-11-2832 min
Just Say MaybeJoe: Living with FOP, Being on Special Books by Special Kids, and Changing Your Mindset for SuccessHi everyone! In this episode of the Just Say Maybe Podcast, I chatted with Joe Sooch,a fellow podcaster and Youtuber. Joe is diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), a rare disease that essentially turns his muscles into bones. In this conversation, Joe and I talk about our experiences being on Special Books by Special Kids, how he got into content creation, and changing your mindset for success. Update: Joe is now monetized on Youtube! Whoo! 0:00 - Intro 1:20 Experience of being on Special Books by Special Kids6:20 - Misconceptions of Joe becaus...2022-10-3150 min
PrecariousMan Turning Into Stone - My Conversation with Joe SoochJoe Sooch is 29 years old and has been living with Fibrodysplasia ossificans progressiva (FOP) is a very rare genetic connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present such as the ligaments, tendons, and skeletal muscles. He has lost 95% of his mobility and relies on others to help him with daily functions. But, talking to him, you wouldn't know it. He has a way of living with this disease that puts it in the background which is impressive given how this has physically shaped his life. And, this...2022-08-1150 min
Mombies14 - Lisa McVeyHello, spooky humans. This week, Christina, Beth, and Holly discuss two stories of individuals with troubled upbringings, and how their paths would ultimately collide, changing both of their lives forever. Come along with us on a very twisted journey of terror, tragedy, but also courage, that will break your heart but give you hope. This is the story of how 17 year old Lisa McVey found herself in the claws of a ruthless predator, and how her quick thinking and bravery lifted her from a dire situation in which other victims did not escape.*Content Warning: Child Sex...2022-08-031h 24
The Sod's Law PodcastMan Turning to Stone w/ Joe SoochThis week I’m talking to Joe Sooch…
Joe is a podcaster and YouTuber who lives with an extremely rare genetic condition, called fibrodysplasia ossificans progressiva, or FOP, in which fibrous connective tissue such as muscle, tendons, and ligaments turn into bone tissue.
It’s progressive, meaning it gets worse over time, it’s the only known medical condition where one organ system changes into another and it’s so rare that only around 800 cases have been confirmed worldwide.
Joe is only 29, but he’s now at the point where most of his...2022-06-201h 13
Beyond Chronic Burnout: The Talk Show for Autistic Women & Their Helping Professionals084- Relationships & Rare Disease with Joe SoochHow would you choose to spend your time and who would you choose to spend your time with if you knew your time was ticking and your body was turning to solid bone?
Meet Joe Sooch who has a rare disease called FOP which is slowly turning his body to solid bone. Joe invests his time in elevating the voices of others who have disabilities and rare conditions too on his YouTube Channel, Two Mics, One Joe Sooch.
Joe and I talk relationships, how we view them differently as Neuro-Majority and NeuroDistinct brains, interabled relationships a...2022-05-1841 min
Two Disabled Dudes178 - Man Turning Into Stone - Joe SoochJoe Sooch points out that we only have one life to live so we better make the most of it. He has a rare disease called Fibrodysplasia ossificans progressiva (FOP) - a genetic disorder that causes soft tissues to transform permanently into bone. Joe uses a wheelchair and FOP has limited his physical abilities in many other ways. However he is determined to make the most of the time he's been given. Find Joe Sooch on YouTube or Instagram. Listen to Joe interview us on his podcast Two Mics, One Joe Sooch.2022-04-1146 min
The Health Design PodcastJoe Sooch, patient advocate.Joe Sooch here. I have a rare disease called FOP where my muscles turn into bones literally I was born with all my limbs working normally with free range. As I get older, I’ll get swellings all over my body and bones just start forming the bones grow and locks my body into place permanently. I can get surgery or more bones will grow. My DNA is faulty so there is nothing any doctor can do to help. I am stuck like this permanently and just have to deal with it.
https://www.instagram.com/joeysooch/
https://www.youtube.co...2021-12-0528 min