One kind suggestion if u don't mind.... please try to make videos outside home sometimes ..in fresh air like park or garden (travel, shoping blogs) which will surely change ur level of energy and fan base too .... thank-you.
Hey, I just saw your video on Benign Congenital Hypotonia. I was born with the same thing and your story is eerily similar to mine. I have never really found someone with BCH as most hypotonia patients also have progressive disorders attached. I would love to hear more about your experiences and compare. You can find me on instagram or snapchat @parkerstoner. No pressure, just wanted to reach out.
Unfortunately, I do not have either, but I'm happy to chat in the comment section. My Hypotonia was deemed to not be genetic, so it was something that happened due to a physical cause which could be linked to a number of things that happened in my mother's pregnancy.
@@vitaluka mine is also thought to not be genetic. I have deletions in my 2nd chromosome, and duplications in 8 and 11, however they don’t know what that means for the overarching condition. What kind of daily effects do you have?
I don't have anything wrong with my chromosomes but I have dislocated one of my shoulders about 6-7 times now (one case I don't really know if it was a dislocation or not as it was my first one) but the lack of muscle tone allows the bone to move around more and have everything shift in that area, according to my GP. I also sprain and strain other body parts easily. I fall a lot from random muscles in my legs just deciding to quit, which causes the dislocations, sprains and strains. I am also flexible in certain areas and have double jointedness in others but doctors can't pinpoint if that's from the hypotonia or not. Those are mainly my day to day things, how about you?
@@vitaluka I have the same issues. In fact I have a sprained ankle right now as a result of muscle weakness. My “everyday symptoms” include inability to jump more than a couple inches off the ground, run, or take stairs at a normal pace. These are all directly related to muscle weakness and, similar to yours, do not have a formal diagnosis at this time.
Well I hope someone can figure out what's going on with you and maybe give you something to help. I know mine isn't as bad as yours, but I hope it gets better for you.
Hi there, this just a thank you for sharing your hypotonia video. My daughter who is 2.5 has hypotonia.
Hi, Vita I'll be traveling to brno soon😄..after paper works🥰
Do you have any help/contacts/advice I can provide to a Ukrainian refugee I know is currently seeking an apartment for herself and her son in Prague
Big fan ...keep on and motivated... you posts very informative ... surely wanted to meet u in person if I come to Czechia... Namaste 🙏❤️
One kind suggestion if u don't mind.... please try to make videos outside home sometimes ..in fresh air like park or garden (travel, shoping blogs) which will surely change ur level of energy and fan base too .... thank-you.
We are in a strict quarantine right now, so I would love to eventually but it would basically require me to yell so you can hear me outside the mask.
Useful, thx.
Please go more straight to the point.
Hey, I just saw your video on Benign Congenital Hypotonia. I was born with the same thing and your story is eerily similar to mine. I have never really found someone with BCH as most hypotonia patients also have progressive disorders attached. I would love to hear more about your experiences and compare. You can find me on instagram or snapchat @parkerstoner. No pressure, just wanted to reach out.
Unfortunately, I do not have either, but I'm happy to chat in the comment section. My Hypotonia was deemed to not be genetic, so it was something that happened due to a physical cause which could be linked to a number of things that happened in my mother's pregnancy.
@@vitaluka mine is also thought to not be genetic. I have deletions in my 2nd chromosome, and duplications in 8 and 11, however they don’t know what that means for the overarching condition. What kind of daily effects do you have?
I don't have anything wrong with my chromosomes but I have dislocated one of my shoulders about 6-7 times now (one case I don't really know if it was a dislocation or not as it was my first one) but the lack of muscle tone allows the bone to move around more and have everything shift in that area, according to my GP. I also sprain and strain other body parts easily. I fall a lot from random muscles in my legs just deciding to quit, which causes the dislocations, sprains and strains. I am also flexible in certain areas and have double jointedness in others but doctors can't pinpoint if that's from the hypotonia or not. Those are mainly my day to day things, how about you?
@@vitaluka I have the same issues. In fact I have a sprained ankle right now as a result of muscle weakness. My “everyday symptoms” include inability to jump more than a couple inches off the ground, run, or take stairs at a normal pace. These are all directly related to muscle weakness and, similar to yours, do not have a formal diagnosis at this time.
Well I hope someone can figure out what's going on with you and maybe give you something to help. I know mine isn't as bad as yours, but I hope it gets better for you.