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 but we had just been literally throwing our guts out moments before. We may look fine to other’s but we had just gotten out of the hospital because this disease knocked us down.
I am supporting this piece of legislation because of the fact that that person is me. I have had my life stolen right out from under me. I can no longer work because of Gastroparesis. Because of the life altering consequences of Gastroparesis I can no longer be the husband or the father that I strive so hard to be. I support this legislation because there is currently NO cure for Gastroparesis and treatment options are severely limited with many treatments not even helping the symptoms of this disease at all. We are a large group of misunderstood people fighting for our lives. We have cures and treatment for cancer and other illnesses that affect American people throughout and while I am not downplaying those diseases at all, I want to see Gastroparesis research to be better funded so those who come after us can have a legitimate chance of leading a normal life.
Lastly I advocate for this disease because it is the right thing to do. I want people to understand what we go through every day and what risks are associated with Gastroparesis. My message is simple, let’s find a cure, let’s find better treatments for Gastroparesis however we cannot do any of that without support and increased funding.
Thank you very much,
Louisville Kentucky resident