Never heard of it?
I am not suprised!
The National Institure of Health estimates that 5 million Americans have been diagnosed with Gastroparesis making it a common condition. To put it into perspective, that means that more people have Gastroparesis than the total population of the state of South Carolina!
Gastroparesis is slow gastric emptying and is usually caused by damage to the vagus nerve. The damage can be caused by Diabetes, Myopathies, Neuropathies, Autoimmune Disorders, Viral Infections or can be Idiopathic meaning that no root cause is ever identified. When a person has Gastroparesis they live daily with nausea, bloating, abdominal pain and lack of appetite. They often are not able to eat (if the food does not leave the stomach then there is no room for new food to enter) and in severe pain that greatly impacts quality of life.
There are very few treatments available (most of them have dangerous and lifelong side effects and even then do not work) and really no studies being done to look for new treatments mainly because most people have never heard of this condition until they are daignosed with it... as a matter of fact, many Doctors do not even know what signs to look for or how to test for this condition. The sad fact is that the people with Gastroparesis usually feel too rotten to try to form advocate groups to put pressure on the media and Politicians to get the word out and lets face it... you need a loud 'voice' to get things done.
I have Gastroparesis and I am trying to get the word out there because we desperately need research for better treatment options and there are people out there suffering without hope or a diagosis because this disease is the giant ape in the room that no one is looking for.
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have you heard of the pace maker that they can install inside your stomach to make it empty like it should or close to it? I saw or read about it somewhere but can't remember where for i also have emptying problems always bloated etc. etc. Did not know it had a name, can you write back to me so i can ask a few questions? Hope you feeling well, Margie.
Always Lonely, it is called the Gastric Pacemaker made by Medtronics.
You can check out http://www.gastroparesis.webs.com to learn more about Gastroparesis and can contact me through there.
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I actually did suggest it to the show right before I posted the blog.
I have been twittering and working on my website and I hear things like "it is even more shocking when I go to the hospital for treatment that none of the technicians working on me know about Gastroparesis considering how many people have it" and others like always lonely who did not know the condition had a name.
I feel like I am trying to swim through syrup when it comes to getting the word out about Gastroparesis, but every journey starts with one step and every movement begins with one person walking, so I guess I will start walking and talking and hope others that suffer from it will join in and add their voices.
My friend has had sustained nausea for two years because of Vagus nerve damage from diabetes. She is taking
Domperidone before she eats anything, but still it only helps marginally. She takes Reglan also. Is there anything
out there that might help? She really can't take the nausea anymore....she would rather be in pain!
Thanks!
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