On August 24th, 2018 Faces of GP Alliance held our First Annual Memorial Service, honoring our fallen Warrior Angels. The event was held at Kaleido-Sno in Rome, Ga. led by Anitra Duke. Sadly, we have lost about 60 members of the Gastroparesis community in the last 18 months, averaging almost 1 per week. This is very hard on our community.
The event started at Kaleido-Sno, where attendees lit candles and walked through town to the Town Green, where the Memorial Service commenced. Stories of some of our Warrior Angels were read for Denise Smith, Brandon Dunas, Maria Gutierrez, Marni Herskowitz and Holly Marenic. Holly's mom, Kimberly was able to attend the memorial with the support of her family and friends as she shared about her daughter.
After the stories were read, Anitra closed the service with the Lord's Prayer.
This will be an event that will be held each August during Gastroparesis Awareness Month. It is our hope that a bill that will be submitted to Congress if it gets enough sponsors, will finally give the community the much needed funding for research.
Gastroparesis is literally translated as paralysis of the stomach. For many there is no known cause and are labeled “idiopathic”. Diabetes is one of the most known causes of Gastroparesis, along with damage to the Vagus nerve. With over 5 million people suffering with this disease, there is still lack of knowledge which brings delayed diagnosis and can cause patients to become critical before proper treatment can begin.
Some of the symptoms can be one or all of the following:
- ·Early fullness while eating
- ·Abdominal Pain
- ·Weight Gain or Loss
Some of the things that can contribute to or cause Gastroparesis can be the following:
- ·Damage to the Vagus Nerve
- ·Connective Tissue Disorders
- ·Neuromuscular Disorders
- ·Autoimmune Disorders
- ·Certain cancers and their treatments
- ·Idiopathic (unknown cause)
There are various tests that Gastrointestinal Doctors will order to diagnose Gastroparesis. The most common can include:
- ·Upper Endoscopy
- ·Gastric Emptying Study
- ·Smart Pill
Treatment for Gastroparesis varies from case to case. They can be started with a modified diet that is low in fat and fiber; given medications to ease the symptoms; given Botox injections to the Pylorus; and when all else fails being put on parenternal feeds through IV; G-POEM, an endoscopic procedure to divide the pyloric sphincter without surgery; and surgical procedures like enternal nutrition through a jejunostomy tube; gastrostomy tube for venting; Pyloroplasty to widen the opening of the stomach; Gastrectomy to remove part or all of the stomach; and Gastric Stimulators have been done.
One of the most commonly needed treatments when patients arrive at the Emergency Room is hydration and pain management. Dehydration can lead to critical consequences.
Managing blood glucose can be difficult in diabetic patients because the rate in which the stomach empties is so inconsistent.
Malnutrition is very common in Gastroparesis, due to the poor absorption of nutrients and low caloric intake.
Where one treatment may be met with great success, that may not work for the next person, making treating Gastroparesis challenging. All drugs and procedures come with inherent risks, therefore risk versus benefits are a continued challenge for both the patient and medical professionals.
There is no cure, but some have had periods of remission. We continue to hope and fight for a cure through advocating and educating!
We will never forget those who have passed. We will continue to advocate and educate until we have a cure! If you want to know how you can help, contact us! We are a very active community, vowing to make a difference to the care the community receives from their providers by sharing personal stories and developing protocols to keep our community members from being repeatedly admitted to the hospital and having repetitive visits to the emergency room.
Sources: International Foundation for Functional Gastroinestinal Disorderds (IFFGD); Digestive Health Alliance; American College of Gastronenterology