My daughter is 16 now, but got diagnosed last year when she was 15 with Hyper mobility EDS, POTS & and congenital heart disease called LVNC (Left Ventricular Non compaction). She never complained about her symptoms as she thought everyone felt the same way and would just persevere through her injuries, even with a broken arm at 5yrs old. I had to really advocate for her, especially when she could have died in the middle of a volleyball tournament and was ignored by her cardiologist. When I wouldn’t let it go, the cardiologist referred her to a Physiologist Cardiologist who has been so wonderful with her. I’m so appreciative that you’re sharing your story and experiences. Can’t help but cry as I agree w/every video and what our daughter has been going through. She will be encouraged to see feel less alone.❤❤❤
@@shelbystewart5495 it was my first virtual appointment today. I'm in Ontario, Canada and there's only the one clinic here. Like you, and many others, I had to investigate and put things together myself - mine after a major medical in October. I just received the report online of the doctors notes - many pieces included were not the responses I gave and there were a couple questions he didn't even ask me. I'm supposed to go (mine is a 4 hour drive as well) to the clinic in person but I'm feeling incredibly disheartened. I KNOW my body. And I stumbled on EDS accidently, but it made my entire life health history make sense. What were some of the ways you coped with this at the beginning? I really hope you're doing well these days 💜 My friend found you for me on what to expect my first in person visit and I'm so happy I've found you 🦓
Thank you for sharing!! I just found out I have EDS with 39yrs. Went sooo many doctors, that kept saying there were nothing wrong with me. Why can't they just do their job instead of saying is psychosomatic?
My daughter is 16 now, but got diagnosed last year when she was 15 with Hyper mobility EDS, POTS & and congenital heart disease called LVNC (Left Ventricular Non compaction).
She never complained about her symptoms as she thought everyone felt the same way and would just persevere through her injuries, even with a broken arm at 5yrs old. I had to really advocate for her, especially when she could have died in the middle of a volleyball tournament and was ignored by her cardiologist. When I wouldn’t let it go, the cardiologist referred her to a Physiologist Cardiologist who has been so wonderful with her.
I’m so appreciative that you’re sharing your story and experiences. Can’t help but cry as I agree w/every video and what our daughter has been going through.
She will be encouraged to see feel less alone.❤❤❤
Thank you for sharing your EDS story
Thank you so much for subscribing and watching!
I'm in tears. I'm just starting my EDS journey and I cannot describe how validated I feel by you right now
@@jenniferlee1410 awww I’m so sorry you’re going through all this as well. Welcome to the zebra family though!!
@@shelbystewart5495 it was my first virtual appointment today. I'm in Ontario, Canada and there's only the one clinic here. Like you, and many others, I had to investigate and put things together myself - mine after a major medical in October. I just received the report online of the doctors notes - many pieces included were not the responses I gave and there were a couple questions he didn't even ask me. I'm supposed to go (mine is a 4 hour drive as well) to the clinic in person but I'm feeling incredibly disheartened. I KNOW my body. And I stumbled on EDS accidently, but it made my entire life health history make sense. What were some of the ways you coped with this at the beginning? I really hope you're doing well these days 💜 My friend found you for me on what to expect my first in person visit and I'm so happy I've found you 🦓
Thank you for sharing!! I just found out I have EDS with 39yrs. Went sooo many doctors, that kept saying there were nothing wrong with me. Why can't they just do their job instead of saying is psychosomatic?