Hey girls, this talk was very importante, is so differente reading about vEDS and actually listen real experience of people with vEDS, thanks so much for sharing! I just got diagnosed with hEDS, but didn't do the genetic test yet, I don't have veds and I cannot even imagine how hard it must be... Wishing you all the best!
Hi Bella it is nick. I just want to let you know that you inspire me all the time. You might not remember the pep talk you gave me about disability when I first entered university but I certainly do. Now I am in Massachusetts getting my graduate degree. You have always been the dove that flys, despite the storm. You have colored the world and always will.
My thoughts and prayers ( that’s just how I am) is with anyone who has this type. I have the Classical type and it is very annoying! I’m constantly in high pain levels especially when the weather is inclement such as rainy.
As someone who had very little knowledge of VEDS coming into this video/stream, I found it very enlightening and entertaining. I admire the two of you and anyone else who suffers with VEDS, you are incredibly strong people
Lovely ladies thanking You both for this. Please look into how coffee is decaffeinated. I was wondering about it one day , let’s just say I don’t drink decaffeinated anymore, but I absolutely love my coffee. Can’t drink Nescafé it has a strange effect on my eyes every time I’ve tried it. Now I only drink good quality beans ground fresh at home 😊
I can hear my stomach even if I have eaten, have the veins visibly all over, extremely pale translucent thin skin. Pass most of the beighton scores ie piezongenic fat papules, ( could not believe they were on my heels) excepting I’m not double jointed but my youngest son is. I have scoliosis, had subluxations, slipped discs or dislocations. “Stiff” heart valve that the doctor said was most likely collagen related. Gastrointestinal issues. Couldn’t take the prep for the endoscopy and colonoscopy which is perhaps a blessing. Low vitamin D. Fluctuating thyroid which goes sub clinically hyper, then resolves if I take iodide. I’m 46. Severely underweight even though I eat plenty. Chest pain, joint pains, neck was worse from twenties on, now all of them are just as bad or perhaps I just can’t ignore my knees and ankles as much as I could my neck. I have had a barrage of tests ct scan, bloods you name it, and the more I am learning the more I think it’s EDS and I think my younger son has it worse than me. Please do more of these as often as is comfortably possible.
@@TranslucentOne These productions people like yourself are making are so greatly appreciated thanks for the support you are giving to so many people like myself. I honestly don’t think I could have managed to find the answers, to test for EDS, which is now my primary priority, if it weren’t for the EDS uploads that people like yourself have made, miraculously have surfaced on the algorithm and have already helped me to feel like there is help available and I am going to find answers. Thanks for the service you are doing to help everyone experiencing these symptoms. It truly is like you are answering prayers and I want you to know how much it means for me and my entire family, let alone the entire EDS community & connective tissue disorder syndrome community. Many many thanks
Hey girls, this talk was very importante, is so differente reading about vEDS and actually listen real experience of people with vEDS, thanks so much for sharing! I just got diagnosed with hEDS, but didn't do the genetic test yet, I don't have veds and I cannot even imagine how hard it must be... Wishing you all the best!
Hi Bella it is nick. I just want to let you know that you inspire me all the time. You might not remember the pep talk you gave me about disability when I first entered university but I certainly do. Now I am in Massachusetts getting my graduate degree. You have always been the dove that flys, despite the storm. You have colored the world and always will.
My thoughts and prayers ( that’s just how I am) is with anyone who has this type. I have the Classical type and it is very annoying! I’m constantly in high pain levels especially when the weather is inclement such as rainy.
Virtual hug to you dealing with that too!
As someone who had very little knowledge of VEDS coming into this video/stream, I found it very enlightening and entertaining. I admire the two of you and anyone else who suffers with VEDS, you are incredibly strong people
Thank you, Mitchell! I appreciate you joining and learning more about VEDS. It means a lot to me to get the information out there to more people. :)
Lovely ladies thanking You both for this.
Please look into how coffee is decaffeinated. I was wondering about it one day , let’s just say I don’t drink decaffeinated anymore, but I absolutely love my coffee. Can’t drink Nescafé it has a strange effect on my eyes every time I’ve tried it. Now I only drink good quality beans ground fresh at home 😊
I can hear my stomach even if I have eaten, have the veins visibly all over, extremely pale translucent thin skin. Pass most of the beighton scores ie piezongenic fat papules, ( could not believe they were on my heels) excepting I’m not double jointed but my youngest son is. I have scoliosis, had subluxations, slipped discs or dislocations. “Stiff” heart valve that the doctor said was most likely collagen related. Gastrointestinal issues. Couldn’t take the prep for the endoscopy and colonoscopy which is perhaps a blessing. Low vitamin D. Fluctuating thyroid which goes sub clinically hyper, then resolves if I take iodide. I’m 46. Severely underweight even though I eat plenty. Chest pain, joint pains, neck was worse from twenties on, now all of them are just as bad or perhaps I just can’t ignore my knees and ankles as much as I could my neck.
I have had a barrage of tests ct scan, bloods you name it, and the more I am learning the more I think it’s EDS and I think my younger son has it worse than me.
Please do more of these as often as is comfortably possible.
Hi ❤️ I’m so sorry you’re going through all this and don’t have an answer yet. We have a livestream tomorrow at 10 am PDT. Hope you can make it!
@@TranslucentOne These productions people like yourself are making are so greatly appreciated thanks for the support you are giving to so many people like myself. I honestly don’t think I could have managed to find the answers, to test for EDS, which is now my primary priority, if it weren’t for the EDS uploads that people like yourself have made, miraculously have surfaced on the algorithm and have already helped me to feel like there is help available and I am going to find answers. Thanks for the service you are doing to help everyone experiencing these symptoms. It truly is like you are answering prayers and I want you to know how much it means for me and my entire family, let alone the entire EDS community & connective tissue disorder syndrome community.
Many many thanks