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Once upon a time, I was a successful model, dancer, cheerleader, beauty queen, actress and writer. After endless rehearsals and performances without rest, I developed a hiatal hernia. I was offered an operation that was to get me dancing again in 14 days time, I was to never dance professionally ever again. To fix my hiatal hernia, I had a Nissen Fundoplication in 2004 that unfortunately was unsuccessful and damaged my Vagus Nerve. After a long fight battling for my life, my body started to collapse until I was under 5 stones in weight (5′ 10″ tall) and I was given 6 days to live. I gave up and left the UK for the USA to say goodbye to my brother who lives there as I was expected to die and to be frank, I wanted to die! Not long after I landed I was hospitalized in the USA and luckily for me, I was diagnosed with Gastroparesis and finally got the life-saving treatment that I needed. However, once back in the UK, the medications that were prescribed to me did not exist in the UK. My
I have always been a person who considered my health above average. I rarely got sick even though I had type 2 diabetes. This year right after ending tax season, I started to feel really sick. I wasn’t too worried except for the fact that I couldn’t eat. I started to think it was nothing and ignored it eating when I could. Finally, I wet to the hospital after almost two weeks of puking anything that touched my tongue. I was misdiagnosed and sent on my way with a 2k hospital bill. I started to take the medicine I was advised to take and things were getting worst. Soon, I wasn’t able to handle water. I was losing so much weight my friends were terrified for me. I was going to the ER once a week and then every two to three days. Finally, right before my birthday I was hospitalized when my blood tests came back strange. They ran test after test and came to the conclusion that motility was the problem. At 32, I was diagnosed with gastroparesis. I spent my birthday in the hospital
I was first diagnosed in 2018. I never even heard of it until they said that was what it was. I started vomiting really bad in February of 2019 and I went back and forth to the hospital for 3 months until I lost 50 pounds and had to be put on a feeding tube. I was put on an nj tube that had a bridle and that broke after 2 months of having it so we had to get it stitched into my nose so it would stay in place. I had my nose stitched 3 times before I told them after 3 months of having it I wanted a gj tube. So we switched me to one in August 2019. Before April 2020 I had went through 21 gj tube exchanges and procedures. I for the last 2 months of having the gj tube I had a lot of pain. So I found a doctor to send me to a surgeon to have a separate j tube and g tube placed. I got those tubes on April 1st and I have had since then except
It’s August 1st, which means it’s the start of Gastroparesis Awareness Month. I’m now 1 year and 9 months into my journey, and it’s been a harder year than I ever expected (and that is after losing 60lbs my first year). In the last year, I’ve had to go on leave from teaching, had 5 feeding tube exchanges, been hospitalized 23 days total, and had too many blood draws, IVs for hydration, doctor appointments, procedures, and ER visits to count. (Not to mention trying to parent and homeschool during a pandemic through all of this). The last two months have been the hardest of my life, with a new flare that will not end and is keeping even my feeding tube from working properly. I’ve lost the 15 lbs I had managed to regain in the fall, plus an additional 8, making my loss 23 lbs in less than two months. I will likely keep losing weight while we figure out a solution and am now getting close to being underweight. I have a big procedure this Wednesday which might be my chance at finally feeling better
I am asking my legislator to support this bill on behalf of myself and the many other Gastroparesis Warriors across this country who fight Gastroparesis and it’s debilitating symptoms on a daily basis. Gastroparesis, or paralysis of the stomach is a rare disease that affects only a small percent of the U.S population and not many more than that worldwide. I was officially diagnosed with Gastroparesis in January of 2019 after enduring symptoms of the disease for more than seven years. Because Gastroparesis is considered a rare illness, knowledge of it is severely limited. Many people, including myself go misdiagnosed for many years before being officially diagnosed with the disease. Many doctors have never even heard the term Gastroparesis, let alone it’s life altering symptoms. This disease does not only go misunderstood in the physician community but also with our families, friends, co-workers, and bosses. Because Gastroparesis is on the inside, often times we may look ok on the outside leading to ridicule and judgement from other’s. We may look ok on the outside, bet are literally starving on the inside. We may look ok to others