My backpack keeps me alive - born different
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Date: 2023-09-12
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Comments and reviews: 30
Susanne
Thank you for sharing your story, Kelly. My daughter has EDS-h and suffers with many of the same problems you have. Her digestion is messed up so much she has to have a IV drips daily because she can't even absorb water orally. The food problems are even worse.
In addition to EDS she also has POTS, MCAS, dysautonomia, gastroparesis, Reynaud's disease, fibromyalgia, and spinal stenosis. Her hypermobility is so severe she can hardly move without dislocating something, including her throat and her ribs. I can hear it in her voice when her throat is dislocated. She bought a full body brace to try and help it, but she can't get it on and off because her body goes out so much while she's trying to get it in place.
It's taken years to get a diagnosis, which she got about two years ago, and effective treatment is difficult, nearly impossible to find. She's become allergic to everything she eats, so she's actually diagnosed as food intolerant and can hardly eat anything. She's so skinny that I worry every day that she won't survive. :( She hasn't been able to do TPN because she's allergic to it as well. I hope and pray every day that they'll find new ways to help people like her (and you) who struggle so much and try so hard just to function in the world. I wish so much that doctors would believe you, as well, and not treat so many like it's all in their heads. -grrr- Severe EDS is a terrible, hard, life stealing disorder and I wish you the best.
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Thank you for sharing your story, Kelly. My daughter has EDS-h and suffers with many of the same problems you have. Her digestion is messed up so much she has to have a IV drips daily because she can't even absorb water orally. The food problems are even worse.
In addition to EDS she also has POTS, MCAS, dysautonomia, gastroparesis, Reynaud's disease, fibromyalgia, and spinal stenosis. Her hypermobility is so severe she can hardly move without dislocating something, including her throat and her ribs. I can hear it in her voice when her throat is dislocated. She bought a full body brace to try and help it, but she can't get it on and off because her body goes out so much while she's trying to get it in place.
It's taken years to get a diagnosis, which she got about two years ago, and effective treatment is difficult, nearly impossible to find. She's become allergic to everything she eats, so she's actually diagnosed as food intolerant and can hardly eat anything. She's so skinny that I worry every day that she won't survive. :( She hasn't been able to do TPN because she's allergic to it as well. I hope and pray every day that they'll find new ways to help people like her (and you) who struggle so much and try so hard just to function in the world. I wish so much that doctors would believe you, as well, and not treat so many like it's all in their heads. -grrr- Severe EDS is a terrible, hard, life stealing disorder and I wish you the best.
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Yuki
i'm Sarah-Rose Reed i use to be on a feeding tube i have a rare disease as well i can't eat alot of protein or have any kinds of shots or different meds i have a RARE Disease called Mitochondrial Disease MCAD SCAD and FAOD and i can't eat alot of normal foods like my friends and family i eat alot of carbs to keep my health stable i have to make sure to check my blood surgers if my blood surger is low i can get really sick and that is scary i do these things to live just like you people don't understand that's why i talk about it so people do understand and i also have epilepsy and pain in my legs non stop
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i'm Sarah-Rose Reed i use to be on a feeding tube i have a rare disease as well i can't eat alot of protein or have any kinds of shots or different meds i have a RARE Disease called Mitochondrial Disease MCAD SCAD and FAOD and i can't eat alot of normal foods like my friends and family i eat alot of carbs to keep my health stable i have to make sure to check my blood surgers if my blood surger is low i can get really sick and that is scary i do these things to live just like you people don't understand that's why i talk about it so people do understand and i also have epilepsy and pain in my legs non stop
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Serendipity
I have hEDS- which type is this one in the video? There are a lot of types, so just EDS is not to specific. Luckily I don-t need any crazy machines-a bit of medicines, and pt for now-but it definitely does change your life. Can-t do any contact sports (aka basically none, and need to be careful. Also a lot of conditions come with this, since it kinda effects your whole body, but anybody who is going through a hard time, know this: You can do this. You matter. You are NOT alone. You WILL get through this, and if you need it, let others help you through this hard time
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I have hEDS- which type is this one in the video? There are a lot of types, so just EDS is not to specific. Luckily I don-t need any crazy machines-a bit of medicines, and pt for now-but it definitely does change your life. Can-t do any contact sports (aka basically none, and need to be careful. Also a lot of conditions come with this, since it kinda effects your whole body, but anybody who is going through a hard time, know this: You can do this. You matter. You are NOT alone. You WILL get through this, and if you need it, let others help you through this hard time
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Tyrinasaurus
I understand having a backpack to live. I have gastroparesis and I have all of my medicine and stuff in my bag and I keep juice and snacks in there too to keep my blood sugar high because it tends to drop really really fast. So as I can say you are really strong and amazing and are a TRUE inspiration to me because right now I am at my lowest and you told me to learn about my disease and to keep positive so that-s what Im gonna do! Thank you!
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I understand having a backpack to live. I have gastroparesis and I have all of my medicine and stuff in my bag and I keep juice and snacks in there too to keep my blood sugar high because it tends to drop really really fast. So as I can say you are really strong and amazing and are a TRUE inspiration to me because right now I am at my lowest and you told me to learn about my disease and to keep positive so that-s what Im gonna do! Thank you!
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Connie
I'm happy for you that you finally got a correct diagnosis. I understand how difficult it can be at times to receive the correct determination of what is causing your health issues. And then getting the best physician to handle your care. Those of us whom live with Autoimmune disease's and disorder's especially rare ones must advocate for ourselves. And often times other's as well. Thank you.
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I'm happy for you that you finally got a correct diagnosis. I understand how difficult it can be at times to receive the correct determination of what is causing your health issues. And then getting the best physician to handle your care. Those of us whom live with Autoimmune disease's and disorder's especially rare ones must advocate for ourselves. And often times other's as well. Thank you.
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Rose
Thank you for sharing. I'm in the process of trying to find out what is wrong with me. I was fine up until I turned 50 and had a pseudoaneurysm in my pancreas that was caused by MALS. Working with GI Doctor and going to bring this to his attention. It is so unfortunate that we have to fight and advocate for ourselves to get the doctors to look into and find the underlying problem.
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Thank you for sharing. I'm in the process of trying to find out what is wrong with me. I was fine up until I turned 50 and had a pseudoaneurysm in my pancreas that was caused by MALS. Working with GI Doctor and going to bring this to his attention. It is so unfortunate that we have to fight and advocate for ourselves to get the doctors to look into and find the underlying problem.
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ctc
You know, maybe you could start a backpack collection. They obviously need to be able to hold and support all your equipment, but have an array for different styles and colors and seasons. It might be another way to embrace the situation and make it your own in a way. It-s cool if you-re not for that. Either way, your story is definitely inspiring and power to you!
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You know, maybe you could start a backpack collection. They obviously need to be able to hold and support all your equipment, but have an array for different styles and colors and seasons. It might be another way to embrace the situation and make it your own in a way. It-s cool if you-re not for that. Either way, your story is definitely inspiring and power to you!
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Introverted
Dang! She's so strong and powerful. Thank you so much for sharing your story. I have a much milder version of eds. For me, its mostly joint pain and dislocations. I couldn't imagine going through more than that. Its amazing how she is able to push through the struggles to spread awareness about chronic diseases
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Dang! She's so strong and powerful. Thank you so much for sharing your story. I have a much milder version of eds. For me, its mostly joint pain and dislocations. I couldn't imagine going through more than that. Its amazing how she is able to push through the struggles to spread awareness about chronic diseases
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tabitha
This truly sucks concidring tpn isn't supposed to be used for extended periods of time it's considered a last ditch effort from a nutritional standpoint I learned some not so nice side affect s of tpn while helping a family friend who had to use it I am glad your doing better than most who have to use tpn
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This truly sucks concidring tpn isn't supposed to be used for extended periods of time it's considered a last ditch effort from a nutritional standpoint I learned some not so nice side affect s of tpn while helping a family friend who had to use it I am glad your doing better than most who have to use tpn
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JR
I-ve just got home from a 10 month stay in hospital where I was on TPN most of the time. I have a stoma now and am doing my best to get enough calories in by mouth to hopefully gain some weight. I can-t imagine being on a TPN for life! Bless this girl, she-s very brave and an inspiration!
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I-ve just got home from a 10 month stay in hospital where I was on TPN most of the time. I have a stoma now and am doing my best to get enough calories in by mouth to hopefully gain some weight. I can-t imagine being on a TPN for life! Bless this girl, she-s very brave and an inspiration!
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Amanda
Educate me. (I mean absolutely no disrespect genuinely curious. It appears you can walk. Why do you use a wheelchair? Would love to learn more about your condition.
You're a strong and beautiful woman. And again I meant absolutely no disrespect.
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Educate me. (I mean absolutely no disrespect genuinely curious. It appears you can walk. Why do you use a wheelchair? Would love to learn more about your condition.
You're a strong and beautiful woman. And again I meant absolutely no disrespect.
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Laura
Thank you so much for sharing! Also, people don-t understand that people who are capable of walking may need a wheel chair. I use a walker out of the house and a transport chair when my symptoms flair. I-m not sure if a wheel chair is in my future.
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Thank you so much for sharing! Also, people don-t understand that people who are capable of walking may need a wheel chair. I use a walker out of the house and a transport chair when my symptoms flair. I-m not sure if a wheel chair is in my future.
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JBoo
Me n my family have vascular Ehlers Danlos Syndrome n let me tell you the pain. Ooof the pain. The dizziness, the passing out n the vomiting always seem to have allergic reactions daily. I would not wish this on anyone
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Me n my family have vascular Ehlers Danlos Syndrome n let me tell you the pain. Ooof the pain. The dizziness, the passing out n the vomiting always seem to have allergic reactions daily. I would not wish this on anyone
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Jacque11ne
Imagine if the world as we know it collapses. the grid. everything. These people won't have a chance. be the first ones to go. Everyone says theyre so -strong- and brave. Truth is they just don't have a choice.
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Imagine if the world as we know it collapses. the grid. everything. These people won't have a chance. be the first ones to go. Everyone says theyre so -strong- and brave. Truth is they just don't have a choice.
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Becca
I know 3 people with EDS but only mild ones like that they can move their joints in positions I couldn't and I think my cousins mum has pain. But never seen anything that EDS does, but she has the diagnosis
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I know 3 people with EDS but only mild ones like that they can move their joints in positions I couldn't and I think my cousins mum has pain. But never seen anything that EDS does, but she has the diagnosis
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Trevor
I love how Stright forward she is about it and what-s ppl to learn more about her disorder to get the word out there while ppl continue to research to maybe hopefully they will find a cure
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I love how Stright forward she is about it and what-s ppl to learn more about her disorder to get the word out there while ppl continue to research to maybe hopefully they will find a cure
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Annika
Wow labs every week, it-s great they take such good care of her. Probably much better than it would be here in Sweden, health care sucks here especially for chronic and rare conditions.
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Wow labs every week, it-s great they take such good care of her. Probably much better than it would be here in Sweden, health care sucks here especially for chronic and rare conditions.
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Danielle
EDS is rough to live with. She makes the best of life. Fellow zebra, you go girl! Ehlers Danlos is extremely painful for me. My body attacks itself through MCAS.
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EDS is rough to live with. She makes the best of life. Fellow zebra, you go girl! Ehlers Danlos is extremely painful for me. My body attacks itself through MCAS.
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Susan-1Love
you-re from my home state yay Arkansas go go go! Thanks for that advice that is really good advice never thought of it that way I disabled too so TY
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you-re from my home state yay Arkansas go go go! Thanks for that advice that is really good advice never thought of it that way I disabled too so TY
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Fictivetilda
I-m in the process of getting diagnosed with Gastroparesis Kelly you seem like such a lovely person if you want would love to have a chat
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I-m in the process of getting diagnosed with Gastroparesis Kelly you seem like such a lovely person if you want would love to have a chat
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RCenal
And you know what's
This young lady is still going
Sorry to hear about your troubles
I hope you get to live a fulfilling life
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And you know what's
This young lady is still going
Sorry to hear about your troubles
I hope you get to live a fulfilling life
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James
I don't regret making fun of her. I was doing it back when it was cool. And I will continue to do it until I can do it no longer.
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I don't regret making fun of her. I was doing it back when it was cool. And I will continue to do it until I can do it no longer.
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Madeline
What a well spoken young woman! Hope that with her advocacy, they can make strides in research and ultimately finding a cure!
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What a well spoken young woman! Hope that with her advocacy, they can make strides in research and ultimately finding a cure!
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Estelana
Why don-t you get a IV pole so you can put your backpack on it and it doesn-t have to be on your bed when you sleep
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Why don-t you get a IV pole so you can put your backpack on it and it doesn-t have to be on your bed when you sleep
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+. Jalena. +
Huh, i remember reading something really similar to this. Anyone who has to deal with this is really strong.
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Huh, i remember reading something really similar to this. Anyone who has to deal with this is really strong.
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Carole
Kelly, you look healthy so you're doing great. Do you have to use the wheelchair because of leg problems or what?
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Kelly, you look healthy so you're doing great. Do you have to use the wheelchair because of leg problems or what?
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Rekless
Man keeping a strong woman. My only thing would be not being able to taste or eat. Like don't ya miss the taste.
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Man keeping a strong woman. My only thing would be not being able to taste or eat. Like don't ya miss the taste.
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Ray
My grandma had crones and had a feeding tube, I miss her so much and this makes me cry cause it reminds me of her
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My grandma had crones and had a feeding tube, I miss her so much and this makes me cry cause it reminds me of her
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Whyy_LAZY!
Like I-m like how you so strong I legit start dying if I never ate anything I would rather dieee lol-
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Like I-m like how you so strong I legit start dying if I never ate anything I would rather dieee lol-
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Edward
Cool I have a friend who is hard of hearing like me and she also have EDS too wow small world there lol
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Cool I have a friend who is hard of hearing like me and she also have EDS too wow small world there lol
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