Doctors can't explain our rare conditions - born different
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Date: 2023-09-12
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Comments and reviews: 18
Jamie
I was also diagnosed with POTS using a -poor man's tilt table test-. I go in August for the real thing to confirm the POTS or an autonomic disorder. Thankfully, mine isn't constant and I'm able to do most things most days, but knowing I could drop at any moment, no matter where I am or what I do is hard.
I lost my self-trained service dog, Riker, in April of 2022 to lymphoma. He was 13. I only took him out - in that capacity - on bad days, but knowing that I had him at home and on bad days when I needed to go out, was a huge comfort that I no longer have. I'm looking for another dog, but no one will ever be my Riker.
It's tough, but ya keep going.
Just keep swimming, ya know?
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I was also diagnosed with POTS using a -poor man's tilt table test-. I go in August for the real thing to confirm the POTS or an autonomic disorder. Thankfully, mine isn't constant and I'm able to do most things most days, but knowing I could drop at any moment, no matter where I am or what I do is hard.
I lost my self-trained service dog, Riker, in April of 2022 to lymphoma. He was 13. I only took him out - in that capacity - on bad days, but knowing that I had him at home and on bad days when I needed to go out, was a huge comfort that I no longer have. I'm looking for another dog, but no one will ever be my Riker.
It's tough, but ya keep going.
Just keep swimming, ya know?
reply
Hanna
Nova truly is an adorably cute child. She looks like a darling little elf like child. I can't imagine that anyone wouldn't find her to be exceptionally cute. I doubt anyone would be afraid of her looks ever. I'm glad it's becoming easier for her to communicate. I hope at some point she will be able to speak and to hear better, but if not it will be fine. With ASL and all of the great tech devices available she'll be able to communicate well. I think people are drawn to Nova because she's so cute and personable, looks like she has that special something that some people have.
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Nova truly is an adorably cute child. She looks like a darling little elf like child. I can't imagine that anyone wouldn't find her to be exceptionally cute. I doubt anyone would be afraid of her looks ever. I'm glad it's becoming easier for her to communicate. I hope at some point she will be able to speak and to hear better, but if not it will be fine. With ASL and all of the great tech devices available she'll be able to communicate well. I think people are drawn to Nova because she's so cute and personable, looks like she has that special something that some people have.
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Chimmichurri
I genuinely hope that little one is ok, same with that woman that was showed in the begnning of the video. Also, i hope more people will see people as a person. disabilities to me = regular person. IMO people are people.
Edit: The second video i legit think shes faking it. -im so blind- yet she looks directly at things. and she looks directly at people, AND she doesnt have anything in her eyes like cataracs. think shes lying.
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I genuinely hope that little one is ok, same with that woman that was showed in the begnning of the video. Also, i hope more people will see people as a person. disabilities to me = regular person. IMO people are people.
Edit: The second video i legit think shes faking it. -im so blind- yet she looks directly at things. and she looks directly at people, AND she doesnt have anything in her eyes like cataracs. think shes lying.
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This
Ok Mackenzie-s story tripped me out bc I have a lot of the same symptoms and I was in the hospital and they did that test she talked about. Lay down take blood pressure sit up then stand up. I couldn-t stand for at least 3 days without almost passing out. I still struggle with my blood pressure and drs can-t seem to figure out what-s wrong with me
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Ok Mackenzie-s story tripped me out bc I have a lot of the same symptoms and I was in the hospital and they did that test she talked about. Lay down take blood pressure sit up then stand up. I couldn-t stand for at least 3 days without almost passing out. I still struggle with my blood pressure and drs can-t seem to figure out what-s wrong with me
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Cheryl-Lynn
Nova is adorable. Will there be surgeries to repair her jaw in the future in order to better allow her to breath and swallow, etc? Good luck, I was recently diagnosed with MS, and sometimes disorders that are invisible is more difficult as people just don-t understand.
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Nova is adorable. Will there be surgeries to repair her jaw in the future in order to better allow her to breath and swallow, etc? Good luck, I was recently diagnosed with MS, and sometimes disorders that are invisible is more difficult as people just don-t understand.
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chaosfearsan
Sweet little Nova --I think these have been reuploaded as a compilation. I remember watching the Nova section a couple of years ago. She's five now, they aren't as active on social media anymore but you can still see a more recent post. she's grown so much!
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Sweet little Nova --I think these have been reuploaded as a compilation. I remember watching the Nova section a couple of years ago. She's five now, they aren't as active on social media anymore but you can still see a more recent post. she's grown so much!
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Elizabeth
It is hard living with a undiagnosed health condition. I have loads of small kidney cysts covering both my kidneys and I didn-t find out until was 16 as I was completely healthy before that. I-m now 25 stage 4 15% left
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It is hard living with a undiagnosed health condition. I have loads of small kidney cysts covering both my kidneys and I didn-t find out until was 16 as I was completely healthy before that. I-m now 25 stage 4 15% left
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Kara
She's a -cutie, perfect. Also, she can choose to get cosmetic surgery when older, why not? Had my deviated septum fixed, she can easily get chin implant/nose job after puberty
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She's a -cutie, perfect. Also, she can choose to get cosmetic surgery when older, why not? Had my deviated septum fixed, she can easily get chin implant/nose job after puberty
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Terra
She looks perfect, but watching your child struggling with breathing, hearing, speaking, and eating must be so hard. Her parents are so loving, kind, and confident.
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She looks perfect, but watching your child struggling with breathing, hearing, speaking, and eating must be so hard. Her parents are so loving, kind, and confident.
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we
Looks just like treacher Colli a syndrome but such a beautiful princess she is
Interested to see if any of your kiddos have any issues
But nova is a princess
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Looks just like treacher Colli a syndrome but such a beautiful princess she is
Interested to see if any of your kiddos have any issues
But nova is a princess
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Africana
This goes to show how a sense of humour can literally take you from a dark point to the point of light. Sorry didnt do dishes, cant see sorry, soo funny
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This goes to show how a sense of humour can literally take you from a dark point to the point of light. Sorry didnt do dishes, cant see sorry, soo funny
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Red
All these conditions are conditions that became customized in Africa centuries
ago. our white slave masters saw to centuries ago!
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All these conditions are conditions that became customized in Africa centuries
ago. our white slave masters saw to centuries ago!
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Linda
Beautiful family and lovely little girl. With so much support nothing will hold this beautiful child from achieving her dreams.
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Beautiful family and lovely little girl. With so much support nothing will hold this beautiful child from achieving her dreams.
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Helen
Jay is such an incredible young woman. She may be blind but she has more vision than a lot of people with 20/20 vision.
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Jay is such an incredible young woman. She may be blind but she has more vision than a lot of people with 20/20 vision.
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blogs
Quit swinging those babies around by their arms at the end! You. can pull them out of socket with how much they weigh!
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Quit swinging those babies around by their arms at the end! You. can pull them out of socket with how much they weigh!
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Kathy
What a beautiful little girl. Seems like she has the perfect parents. I wish her all the happiness in the world!
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What a beautiful little girl. Seems like she has the perfect parents. I wish her all the happiness in the world!
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Alison
What a beautiful girl. I work with severely disabled children & i have so much respect for all the parents-
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What a beautiful girl. I work with severely disabled children & i have so much respect for all the parents-
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Saha
She is very sweet! I have a silicone baby doll that looks just like her. I wish I could show you a picture!
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She is very sweet! I have a silicone baby doll that looks just like her. I wish I could show you a picture!
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