Gastroparesis March on Washington DC

I began to advocate for the gastroparesis community shortly after my diagnosis (February 2014), upon joining an online support group where members shared stories of their struggle to be heard, understood, and cared for, by not only their loved ones, but also by segments of the medical community blind to the nature of this illness and the requirements of this population. It quickly became clear to me that many of us felt stigmatized and abandoned and were in desperate need of proper care, and, so, I decided I could not remain on the sidelines and do nothing or listen to people who told me I could not make a difference. I decided to “be bold” for the people in my community who feel as if they have no control over their circumstances and to serve as a voice for those who sometimes feel voiceless. I have since been joined by many others who share that desire to make a difference and that passion for change.

And on June 24, 2019, we are hosting the Gastroparesis March on Washington as our next step in our fight for change.

Collectively, we fight for all involved in our care – loved ones, medical professionals, insurance and pharmaceutical companies, and policymakers – to work together for our good. We wish to be valued as the unique individuals we are, to be believed, and to be treated with compassion and dignity by all who touch our lives. Further, we push for those in power to respect the seriousness of our illness, acknowledge the hardships that flow from it, fund research, support education and awareness, and recognize gastroparesis as the debilitating condition we know it can often be.

We work toward a healthcare system composed of doctors/specialists who are informed about our illness, who are near enough and plentiful enough that we need not travel long distances for treatment, and who are readily available for appointments, so our care is not delayed. We seek physicians who acknowledge our humanity and respect our individual wishes and goals, who are willing to help us understand our care options and collaborate with each other and us to find treatment plans which improve our quality of life, as we define it, rather than abandoning us because we are "too complex" and there is "nothing more" they can do.

We urge researchers and pharmaceutical companies to search diligently for innovative, safe, effective, and affordable treatments and cures – and we call for adequate funding of such pursuits. We implore the FDA to streamline processes and expedite new drug approvals, and we ask our insurance companies to cover treatments which we know from personal experience help with our symptoms. We fight to be free to make our own choices and to weigh the risks of medications and therapies for ourselves.

We beseech our loved ones to look upon us with compassion and treat us gently, to believe this illness impacts our lives in meaningful and significant ways, and to respect and accommodate our very real physical limitations. We ask for their kindness, patience, and support, for their listening ears and accepting hearts, and for their assistance in spreading awareness.

We demand nothing short of a world in which all involved in our care are educated about our illness, comprehend its impact on our lives, offer support, respect our right to self-determination, aid in spreading awareness of our disease, and assist us in getting the help we so desperately need. We hunger for the day where we are no longer overlooked, unknown, taken for granted, mocked, or mistreated, but, rather, where we are heard, cared for, and valued by all those who hold the power to spread our message and transform our care.

We in the gastroparesis community face daunting challenges, but we are not without hope, passion, ability, or recourse! We encourage providers, patients, patient groups, family and friends, and the public to educate others about this life-altering chronic illness, as we stand up, speak out, and fight to raise awareness in our quest for better treatments and, ultimately, a cure.

Gastroparesis, or “paralysis of the stomach,” is a gastrointestinal motility disorder in which the stomach muscles fail to contract and move food through from the stomach to the intestines at the proper rate. It is a slowing of the stomach-emptying process marked by symptoms such as nausea, vomiting, GERD (or acid reflux), early satiety, extreme weight fluctuations, bloating, and stomach/abdominal pain, and it often results in debilitating and sometimes life-threatening complications such as malnourishment, dehydration, esophageal damage, erratic blood sugars, and digestive tract blockages.

The most commonly known cause of this condition is Diabetes, which accounts for about one-third of the cases. Other known causes of Gastroparesis include neurologic disorders such as Multiple Sclerosis and Parkinson’s Disease, connective tissue disorders, complications resulting from surgeries, various medications (such as some narcotics and antidepressants), and direct damage to the Vagus nerve. Most cases of Gastroparesis, however, are labeled “idiopathic,” meaning there is no known cause.

Currently, there is no consistently safe, reliable, and effective treatment for Gastroparesis – and there is no cure. Available treatment options include often ineffective surgeries; medications which carry the risk of serious side effects; feeding tubes or total parenteral nutrition (TPN); and dietary changes (liquids or soft foods), which often do not provide relief.

The NIH estimates 5 million or more of us live with Gastroparesis, but, despite our numbers, we are considered an “orphan” disease due to the lack of resources, support, and attention we garner. Gastroparesis is little-known to the public and often misunderstood by healthcare professionals and others who impact our care. And, so, it is imperative that we, as a community, lift our voices in a united front to raise awareness and bring about much-needed change.