On June 24, 2019 gastroparesis patients from across the country came together as a united front to spread awareness and make our need of more research and better medical treatments known. This was not an easy trip by any means for me, but I felt that it was a meaningful and worthwhile trip for not only myself personally, but for so many in the gastroparesis and GI motility disorder communities.
I am extremely fortunate to have had support and encouragement from my family, online friends, and even my therapist to remind me that it may be a risky and difficult journey physically, due to my health, but also had the possibility to be a unique, purposeful, and special opportunity to me mentally and emotionally. So with fears in the back of my mind, curiosity and the desire to meet others in my online support group, the focus of possibly making a difference, and the determination to follow through on my responsibilities as a patient advocate and friend, I traveled to Washington, DC with my father and teenage kids. Not only did we go to DC to attend the #DCgreen2019 patient-created Gastroparesis Rally on June 24, but also for me to attend IFFGD's (International Foundation for GI Disorders) "Hill Day" event which included a short conference and a day of appointments with US Senate and House of Representative offices.
I spent the morning of June 24th with a few friends that have similar health issues as me, as well as with other digestive motility disorder advocates. Some of these other advocates were parents, medical professionals and IFFGD staff members and volunteers. The speakers during this morning conference were very interesting and informative as they shared with us the reason for advocating, important medical related information about doctor-patient communication, and how patients can be more proactive in raising awareness and pushing for legislative bills that can improve patient healthcare and treatments. Some of the speakers that we listened to were Ceciel Rooker (IFFGD president), Dr Baha Moshiree (GI motility specialist), Hayley McCorckle (IFFGD's public relations), Dr Frank Hamilton (chief of Digestive Disease programs branch in Division of Digestive Diseases and Nutrition at NIDDK), Peter Herzog (Washington representative for IFFGD), Dale Dirks (Washington representative for IFFGD, and Susan Chittooran (Patient Engagement Project Manager of FDA).
At lunch, those of us in the Gastroparesis Support Group who were attending the rally, left to go to our rally location. Originally planned to take place on the Capitol Grounds at Union Square, the rally was moved to an indoor venue, Ivy City Smokehouse, due to the threat of severe thunderstorms.
The energy level increased as everyone began arriving at the venue. Hugs of joy, physically meeting friends met online, and making new friends that actually understand and share the desire to inspire positive change for our community led to a comfortable, exciting, and personal atmosphere. Often feeling out of place, like a "freak" due to health issues or awkward because of health accessories needed such as feeding tubes, ileostomies, central lines, etc - many found this environment allowing each of us to feel "normal" as we were not alone and could truly understand and empathize with each other. As great as uniting and visiting with each other was, the afternoon would consists of even more encouragement and motivation.
Melissa Adams Vanhouten, an amazing friend and advocate welcomed everyone to the rally and shared a moving, inspiring, and focused speech, which is linked below. Dr Michael Cline of the Cleveland Clinic spoke next, sharing important and beneficial facts about gastroparesis, treatment options at the present time, diagnostic tests that he finds most helpful and that should be done by all patients to check the motility of the entire digestive tract as well as autoimmune testing was suggested. He was kind enough to stay and answer questions from our patient community. His informative speech is also linked below. We also heard from a fellow gastroparesis advocate, Debbie, as she read letters of support and encouragement that the Rome Foundation and Dr Pascricha from Johns Hopkins sent to our patient community for this occasion. A dedicated, loving, and grieving father, James shared his daughter Nicole's personal story. He shared beautiful memories of her, the heartbreak of her illness, her love for life and her desire to make a difference and help others even during her own struggles, as well as his determination to keep her dream and memory alive by advocating for the gastroparesis community. A beautiful memorial service was then led by a fellow gastroparesis patient, Kristine. The rally ended with numerous brave patients sharing their stories. They included a child, a young adult with active sepsis, support group members that overcame obstacles to make it to DC, and a daughter expressing concern for her mother while also explaining that they are fighting so hard to advocate not only for her but even more so for the young children that are having to live and deal with this debilitating illness.
Two of the speeches can be heard here by clicking on the speakers name:
Melissa Adams Vanhouten
Dr Michael Cline
Many gastroparesis members attended the #IFFGDHillDay event the following day, June 25th, alongside IFFGD (International Foundation for GI Disorders) staff members and other GI motility disorder advocates. We were divided into small groups based on our state prior to our arrival at our scheduled appointments with US Senators and House Representatives (or their staff). My North Carolina group had a busy and meaningful day meeting and talking with the offices of Senator Burr, Senator Tillis, Representative Butterfield, Representative Price, and Representative Walker. We were supposed to also meet with Representative Foxx, but due to unforeseen circumstances in the schedule, we just left a packet of information with her staff. During each of the meetings, we discussed the house bill 3396, also known as the Functional Gastrointestinal Motility Disorder Research Enhancement Act of 2019, that we hope will be supported and passed, as well as why it is important to our health community. We personally shared a portion of how GI Motility disorders has impacted our lives. (Unexpectedly, tears escaped when I was sharing my personal story with them, especially when I spoke of how it affected my kids and my career.) Other discussion points, besides HR 3396, were our pleas for them to increase NIH (National Institute of Health) funding, increased Department of Defense Gulf War Illness funding, and a FGIMD program for the CDC (Center of Disease Control).
By far, regardless of how purposeful, meaningful, and powerful these two days were, it did not come easily. It took a lot of energy that many of us struggle for daily. As people living with chronic illness, attending these two important events required us to put our health at risks. Many of us chose to power through debilitating symptoms and add additional physical stress to our already worn bodies, all with the hope that our sacrifices would be worthwhile and make a difference, if not for us, for the gastroparesis and GI motility disorder community as a whole.
In conclusion, we left feeling a sense of pride, encouraged by new connections and deeper friendships, and inspired to continue forward with our advocacy efforts. Feeling a sense of accomplishment, we are now in the process of determining what our next courses of action will be.