It's so true. So many people go, "oh, I must have that, too!" When it's been a lifetime of sickness and mistreatment and loosing organs and dying in a hospital to get help. Ehlers can just be chronic pain yes, but it has also taken the lives of young people. It's a spectrum and people need to know that. But, it is not just flexibility. Glad you are spreading awareness.
It was gastroparesis content that I found you through. The worst part of an invisible chronic illness is a feeling of loneliness and not being understood. That's why I watch and hang out here, because you get it. ❤
That's sad about the mess revolving EDS channels on social media. The 13 different types of EDS and most doctors not knowing enough in order to diagnose it fuel the problems. Thankfully you have an opportunity to be a genuine EDS channel, to help in that capacity.
I didn't know there was such a stigma going around EDS (as I have no social media besides YT). It's so sad that you felt the need to keep silent about your conditions and the many issues you face because of it. I'm glad however that you'll continue to spread awareness is the most genuine way possible so that others who are (newly) diagnosed may find some relieve in your content, by hearing that it is still possible to fight for your dreams.
All the misinformation out there is why your channel is such an oasis amidst it all; you do a great job of showing the balance between surviving and thriving without shying away from the best parts of life or the worst parts of your experiences with those diagnoses (and fwiw it **is** all nice to see as someone else with EDS and a lifestyle that would be considered unconventional to a person whose entire perception of living with a disability comes from tiktok misinformation)!
Hey lovely, I was diagnosed with the hypermobile type via criteria. I am yet to get genetic testing though as in Australia it's a really different process. There's query to whether I might have another type.
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It's so true. So many people go, "oh, I must have that, too!" When it's been a lifetime of sickness and mistreatment and loosing organs and dying in a hospital to get help. Ehlers can just be chronic pain yes, but it has also taken the lives of young people. It's a spectrum and people need to know that. But, it is not just flexibility. Glad you are spreading awareness.
This is so true 👌 it's such a complex condition it's not just as simple as having flexibility. Thank you for your ongoing support of my channel ❤️
It was gastroparesis content that I found you through. The worst part of an invisible chronic illness is a feeling of loneliness and not being understood. That's why I watch and hang out here, because you get it. ❤
Thank you for your feedback 🌺 I am feeling more confident to share my journey now I know the benefit it has for others
That's sad about the mess revolving EDS channels on social media. The 13 different types of EDS and most doctors not knowing enough in order to diagnose it fuel the problems. Thankfully you have an opportunity to be a genuine EDS channel, to help in that capacity.
It is sad 😔 and it's a very complex issue that's mainly stemed from tiktok
I didn't know there was such a stigma going around EDS (as I have no social media besides YT). It's so sad that you felt the need to keep silent about your conditions and the many issues you face because of it. I'm glad however that you'll continue to spread awareness is the most genuine way possible so that others who are (newly) diagnosed may find some relieve in your content, by hearing that it is still possible to fight for your dreams.
🌺💖
All the misinformation out there is why your channel is such an oasis amidst it all; you do a great job of showing the balance between surviving and thriving without shying away from the best parts of life or the worst parts of your experiences with those diagnoses (and fwiw it **is** all nice to see as someone else with EDS and a lifestyle that would be considered unconventional to a person whose entire perception of living with a disability comes from tiktok misinformation)!
Thank you so much 💖
What type of EDS do you have? I researched EDS and I think that is why RUclips sent your channel my way. I like that your channel give God the glory
Hey lovely, I was diagnosed with the hypermobile type via criteria. I am yet to get genetic testing though as in Australia it's a really different process. There's query to whether I might have another type.