My beautiful 16 year old daughter, Faith, was diagnosed in September 2012 with Idiopathic Gastroparesis. We had never heard of this disease before, and to put it bluntly, while I was relieved that the doctors had finally could explain why my daughter had been so ill for several long months, I was also petrified as to what this diagnosis meant for my daughter. I came across the G-PACT website when I was doing research on my daughter's condition while waiting the two weeks it took between getting the diagnosis and actually getting an appointment to see her pediatric GI specialist. Many of the sites I found provided generic information about Gastroparesis, but the G-PACT site is different. As I looked at the information on this site, I knew I had found an organization that cared about my daughter and other people suffering from severe chronic digestive illnesses. Not only is G-PACT actively working to raise funds for research into diseases like Gastroparesis, it also provides support groups for and pertinent information about these disease to people who suffer from them. My daughter has been able to connect with other young people who also have Gastroparesis which has been a blessing because it has helped her realize that she is not alone. It is wonderful for her to be able to share her experiences with others who understand what she is going through. I have learned more about how to meet the needs of my daughter through the information provided by G-PACT than I have through any other source, including her doctor. We live in a state where we have no medical professionals who are specialized in treating Gastroparesis, so this information has been a life saver. I have just signed up to be a volunteer for G-PACT because I truly believe in and appreciate the work they do.
It wasn't until I dug below the surface that I learned what G-PACT really does. They are not only a thousands-strong patient support community. They are more than helpers who print cards for patients. They are also investigators who find the people in media and government who are fighting the same fight, and they collaborate with them.
Maintaining a social media presence is one thing, but having physical meetings with legislators to make the needs of the digestive tract paralysis community known, that is something rare and potentially game-changing.
Staffed by volunteers, almost all of whom suffer from the diseases the Org supports, there is copious compassion, empowerment, and educational opportunities.
G-PACT is pushing a very big boulder up a very big hill tirelessly. Help them however you can. I chose to dedicate my time and experience to the volunteer board of directors. There is room to help, and a strong sense of what that help actualizes into.
When I was first diagnosed in 99 I thought I was alone, I went into remission until 2004. I found G-PACT shortly after being diagnosed. They provided info so that I was able to find a dr who could help me since my local GI's were out of options. With all the support they provided I was able to work with them and became a board member around 2011. I help admin several Facebook groups & a yahoo support group. I have also participated in DDNC since 2011 to fight for better treatment for this disease.
When I was diagnosed with Gastroparesis is 2007, I could not find a doctor who had anything but the most basic knowledge about the disease. Through an Internet search, I found G-PACT's website and learned so much about my disease. I contacted them and was sent the contact info of medical specialists in my area, a card to show at restaurants to avoid table minimum charges while going out with friends, and awareness bands that I wore and gave out to my friends and colleagues. I was also added to forums that G-PACT hosts on Facebook, Yahoo, and Inspire, and found an entire community of Gastroparesis patients who are now my friends and my support system. G-PACT kept me from sinking into the isolation that many patients with chronic illness face. Through their work, I have become knowledgeable, empowered, and a powerful advocate for myself and others!
I was diagnosed with gastroparesis in 2008 and in 2009 joined Gastroparesis Patient Association for Cures and Treatments (G-PACT). It is a wealth of information for those of us with Digestive tract paralysis and other related diseases. People need to be made aware of the disease and how to live with it so G-PACT offers waya to be aware of the disease and how to treat it. We also work on research as to date there is no cuire and the disease has been wreaking havoc on many, of all ages. This non profit is trying to help treat the sympltoms, educate, and promote research. As a member of the BOD for 2 1/2 years I see the importance of these functions and want to see G-PACT on the top of the list.