My Condition Means I'll Never Eat Again - BORN DIFFERENT
video description
Date: 2024-06-16
Related videos
Comments and reviews: 20
truly
As soon as I saw the video title and thumbnail, I was like, Omg, Gastroparesis Cuz I have it, too -- though mine is related to Ehlers-Danlos Syndrome, which is a genetic disorder that tends to cause a bunch of other disorders. A lot of those are neurological, like Gastroparesis.
Mine was diagnosed 16 years ago, when I was 19yo (I'm 35yo now. I was really lucky, in that my EDS specialist knew that a lot of EDS patients develop it, so he referred me to a gastroenterologist who treats a lot of his EDS patients.
My Gastroparesis is moderate, in that I can eat a small amount of a very limited selection of foods, so long as I take a ton of meds throughout the day. Along with a lot of supplementation, monitoring electrolytes and vitamin/mineral levels, blood sugar, etc. I'm thankfully able to get by. It's been a massive adjustment and there are times when it gets worse for a while, but I'm conscious of how good things are now, compared to how much worse they may get in the future.
I have a friend with GP who got a gastric pacemaker a few years ago and has had great results with that, so I'm hopeful about future treatment options. But I know what you mean about the toll it all can take on a person's mental health.
Thank you so much for the work you're doing, Liv. It is absolutely vital and you're making a difference for all of us
reply
As soon as I saw the video title and thumbnail, I was like, Omg, Gastroparesis Cuz I have it, too -- though mine is related to Ehlers-Danlos Syndrome, which is a genetic disorder that tends to cause a bunch of other disorders. A lot of those are neurological, like Gastroparesis.
Mine was diagnosed 16 years ago, when I was 19yo (I'm 35yo now. I was really lucky, in that my EDS specialist knew that a lot of EDS patients develop it, so he referred me to a gastroenterologist who treats a lot of his EDS patients.
My Gastroparesis is moderate, in that I can eat a small amount of a very limited selection of foods, so long as I take a ton of meds throughout the day. Along with a lot of supplementation, monitoring electrolytes and vitamin/mineral levels, blood sugar, etc. I'm thankfully able to get by. It's been a massive adjustment and there are times when it gets worse for a while, but I'm conscious of how good things are now, compared to how much worse they may get in the future.
I have a friend with GP who got a gastric pacemaker a few years ago and has had great results with that, so I'm hopeful about future treatment options. But I know what you mean about the toll it all can take on a person's mental health.
Thank you so much for the work you're doing, Liv. It is absolutely vital and you're making a difference for all of us
reply
withpeacelove366
I'm also going through multiple chronic illnesses that weren't diagnosed until my last year of college, some new ones I'm still being diagnosed with, and I have the same mental health issues. I also totally get the feeling of her having to rely on the support of her mom and having to deal with people not understanding that she's sick or disabled because I have to do the same and I don't look disabled. And it's hard because it just seems like there's always more and more issues and no one else is going through them and will never get what it's like for me to have them and suffer with them, but here is this girl suffering with 90% of the same stuff as me. She seems cool. I'd be her friend.
reply
I'm also going through multiple chronic illnesses that weren't diagnosed until my last year of college, some new ones I'm still being diagnosed with, and I have the same mental health issues. I also totally get the feeling of her having to rely on the support of her mom and having to deal with people not understanding that she's sick or disabled because I have to do the same and I don't look disabled. And it's hard because it just seems like there's always more and more issues and no one else is going through them and will never get what it's like for me to have them and suffer with them, but here is this girl suffering with 90% of the same stuff as me. She seems cool. I'd be her friend.
reply
sheribentley3266
Just found you. I had gastroparesis. I want to give you hope. There is hope. I suffered for years. God healed me where the Dr's couldn't. My prayers have always been that He will wipe this disease from the earth. I'm not 100% well but I can eat again in small portions.
My gastroparesis caused me to develope SMA (superior mesenteric artery syndrome) currently working with that and dreading the feeding tube again because I can't gain my weight back. You are beautiful. Thank you for spreading the awareness of a rare disease. Stay strong.
reply
Just found you. I had gastroparesis. I want to give you hope. There is hope. I suffered for years. God healed me where the Dr's couldn't. My prayers have always been that He will wipe this disease from the earth. I'm not 100% well but I can eat again in small portions.
My gastroparesis caused me to develope SMA (superior mesenteric artery syndrome) currently working with that and dreading the feeding tube again because I can't gain my weight back. You are beautiful. Thank you for spreading the awareness of a rare disease. Stay strong.
reply
luvintheprof
What an incredible young woman you are, Liv. One of my friends has a diagnosis of GP amongst other things and is NJ fed. Unfortunately for her, she had to go private for a diagnosis and treatment. She’s had to spend a huge amount of thousands of pounds to treat this condition. It just shouldn’t be like that. It’s a valid illness and you should be able to receive treatment from the NHS. Keep speaking out, Lovely. You’re making SUCH a difference
reply
What an incredible young woman you are, Liv. One of my friends has a diagnosis of GP amongst other things and is NJ fed. Unfortunately for her, she had to go private for a diagnosis and treatment. She’s had to spend a huge amount of thousands of pounds to treat this condition. It just shouldn’t be like that. It’s a valid illness and you should be able to receive treatment from the NHS. Keep speaking out, Lovely. You’re making SUCH a difference
reply
MissCBwasadancer3
I also have Gastroparesis and I’m on TPN (but hope to try going back to tube feeding soon) I was accused of having anorexia for many years but I’m infact injured by HPV vaccine.
Side note: Gastroparesis is NOT a mental health condition but starving yourself and ozemipic can cause your stomach to delay emptying. Diabetes and vagus nerve damage are the most common causes, then a connective tissue disease called Ehlers - Danlos Syndrome.
reply
I also have Gastroparesis and I’m on TPN (but hope to try going back to tube feeding soon) I was accused of having anorexia for many years but I’m infact injured by HPV vaccine.
Side note: Gastroparesis is NOT a mental health condition but starving yourself and ozemipic can cause your stomach to delay emptying. Diabetes and vagus nerve damage are the most common causes, then a connective tissue disease called Ehlers - Danlos Syndrome.
reply
truly
She is really strong. I just got one issue, kids are going to be pointing or staring because she’s different and different brings up curiosity in children. Yes it is rude to point but a lot of times it does stem from an urge to understand why it’s a different thing they are seeing. She’s doing great raising awareness, I just wish she’d understand why children point or stare.
reply
She is really strong. I just got one issue, kids are going to be pointing or staring because she’s different and different brings up curiosity in children. Yes it is rude to point but a lot of times it does stem from an urge to understand why it’s a different thing they are seeing. She’s doing great raising awareness, I just wish she’d understand why children point or stare.
reply
haleyphipps0417
She could be a great candidate for the first stomach transplant. Medical technology has advanced so far in the past few decades, I'm sure a doctor could take a chance to do the first ever stomach transplant and experiment on her as the guinea pig. If it doesn't work, she can still do tube feeds with her central line that provides nutrition to her currently.
reply
She could be a great candidate for the first stomach transplant. Medical technology has advanced so far in the past few decades, I'm sure a doctor could take a chance to do the first ever stomach transplant and experiment on her as the guinea pig. If it doesn't work, she can still do tube feeds with her central line that provides nutrition to her currently.
reply
truly
I met a lovely 13 year old girl with Gastroparesis. I learned all I could about her condition. How sad Olivia was suffering symptoms quite some time before she was diagnosed. When a condition is explained, most people accept it as just a small part of a person's life. I was diagnosed with stage 4 Lymphoma after many years of pain and other symptoms.
reply
I met a lovely 13 year old girl with Gastroparesis. I learned all I could about her condition. How sad Olivia was suffering symptoms quite some time before she was diagnosed. When a condition is explained, most people accept it as just a small part of a person's life. I was diagnosed with stage 4 Lymphoma after many years of pain and other symptoms.
reply
bizkunsman6596
I have Gastroparesis and mental conditions. I'm fighting to eat until the day I can't. I had throwing up episodes recently and I get more and more scared I will need TPN and a heart pump one day. Beautiful humans like her make my future seem a little brighter. Thank you love we can do it. We are stronger than our illnesses.
reply
I have Gastroparesis and mental conditions. I'm fighting to eat until the day I can't. I had throwing up episodes recently and I get more and more scared I will need TPN and a heart pump one day. Beautiful humans like her make my future seem a little brighter. Thank you love we can do it. We are stronger than our illnesses.
reply
truly
Poor woman I've learning disability I have two diseases unfortunately in my life and one of them is general herpes that I have and then I have UC which really sucks Sinai how you feel frustrated with doctors and all that like I'm frustrated with my gastroenterologist because it's like they're not listening to what I have to say
reply
Poor woman I've learning disability I have two diseases unfortunately in my life and one of them is general herpes that I have and then I have UC which really sucks Sinai how you feel frustrated with doctors and all that like I'm frustrated with my gastroenterologist because it's like they're not listening to what I have to say
reply
truly
I’m sorry you have gastro paresis there’s no cure or affective treatments for it I have gastro paresis it’s a nightmare to live with the medication you can’t be on long term only 1 to 3 months then you have to stop it hopefully in the future there might be a cure or affective treatment for gastro paresis
reply
I’m sorry you have gastro paresis there’s no cure or affective treatments for it I have gastro paresis it’s a nightmare to live with the medication you can’t be on long term only 1 to 3 months then you have to stop it hopefully in the future there might be a cure or affective treatment for gastro paresis
reply
truly
I feel for her, I really do. But I’m really tired of the narcissistic attitude of bringing awareness. Not all humans need to know you can’t eat food. That sucks and I’m sorry but every human doesn’t need to be aware of every possibility of illness or pain and it’s weird to want to put that on others.
reply
I feel for her, I really do. But I’m really tired of the narcissistic attitude of bringing awareness. Not all humans need to know you can’t eat food. That sucks and I’m sorry but every human doesn’t need to be aware of every possibility of illness or pain and it’s weird to want to put that on others.
reply
threegoodeyes7400
Did they edit out the part where she explains how the feeding-line direct to the heart works She said it’s what most people were curious about and then they cut to something else. would have been nice for more info, I’m sure she talked about that to the interviewers.
reply
Did they edit out the part where she explains how the feeding-line direct to the heart works She said it’s what most people were curious about and then they cut to something else. would have been nice for more info, I’m sure she talked about that to the interviewers.
reply
truly
It sounds like she still managed to survive before she got her diagnosis even if she was doing poorly which would be preferable to me but what do I know. I'm glad that they don't know for sure that she will never be able to eat again which is better than no hope at all!
reply
It sounds like she still managed to survive before she got her diagnosis even if she was doing poorly which would be preferable to me but what do I know. I'm glad that they don't know for sure that she will never be able to eat again which is better than no hope at all!
reply
truly
When I was little a younger, I couldn’t eat, either. It’s hard for me to eat healthy foods at home, at school or in the hospital. I lost 67 pounds in the past years ago. But then I ate healthy foods and the milkshake and others! I weighed 72 pounds sometimes.
reply
When I was little a younger, I couldn’t eat, either. It’s hard for me to eat healthy foods at home, at school or in the hospital. I lost 67 pounds in the past years ago. But then I ate healthy foods and the milkshake and others! I weighed 72 pounds sometimes.
reply
bigmaguire9714
Never even knew this condition existed. As a big eater myself I can't imagine never eating again, but its better than dying. Also not drinking any water you could imagine your mouth getting very dry.
Wish her all the best
reply
Never even knew this condition existed. As a big eater myself I can't imagine never eating again, but its better than dying. Also not drinking any water you could imagine your mouth getting very dry.
Wish her all the best
reply
calidyme69
She should try the chew and spit method so she can at least taste food. Sounds revolting, I know, but imagine how much pleasure she would have from tasting pasta, or pizza, cookies, ramen, curry, french fries, a sunday roast.
reply
She should try the chew and spit method so she can at least taste food. Sounds revolting, I know, but imagine how much pleasure she would have from tasting pasta, or pizza, cookies, ramen, curry, french fries, a sunday roast.
reply
Bowser14456
I have an eating disorder, so I get going from doctor to doctor and not getting anywhere. I wasn't diagnosed until i was 25. Honestly, I almost died. I was 95 lbs back then. I also have OCD and other things. Stay strong!
reply
I have an eating disorder, so I get going from doctor to doctor and not getting anywhere. I wasn't diagnosed until i was 25. Honestly, I almost died. I was 95 lbs back then. I also have OCD and other things. Stay strong!
reply
amandagreen5297
I had gastroparesis for about 6 years. Between age of 31-37. Was on a jejunum feeding tube for 4 years. Dr's don't know how, but by a miracle I was able to eat again and live a normal life.
reply
I had gastroparesis for about 6 years. Between age of 31-37. Was on a jejunum feeding tube for 4 years. Dr's don't know how, but by a miracle I was able to eat again and live a normal life.
reply
eyeteyteras1717
she looks healthier now coz no more eating no more eating no more garbage in the body this is the future of diet just injecting nutrients so youd avoid the garbages in food
reply
she looks healthier now coz no more eating no more eating no more garbage in the body this is the future of diet just injecting nutrients so youd avoid the garbages in food
reply
Add a review, comment
Other channel videos
