A Voice For Gastroparesis
Imagine a body that rejects food. That one day you were eating (your favorite meal) and the next just a sip of water left you doubled over. No, this isn't April Fools or a Jack Bauer torture scene from the 24 series, it's real life for millions of people living with gastroparesis (GP) around the world.
By taking a moment to contribute today you are not only helping to raise awareness for this devastating and life-altering disease, one in which begins to shut down the function of the digestive tract, but also helping us do everything we can to improve the lives of those living it each and every day.
You can view short videos made from those living with GP, people sharing what it's like and how it has drastically changed their life. Simple things like getting out of bed, taking a shower, working even part-time, coaching the kid's soccer team, all feel impossible.
Here is John's story about living with GP
Keep reading to find out what our mission is and why we are asking for your help.
2017 Funding Mission:
1. Create a documentary with director Neil D'Monte, Actress Jon Marie Mack, film editor Dwen Doggett and film student Lindsey Bangsberg who has gastroparesis. We will be sharing our new approach to this health challenge and the many stories of those living with gastroparesis. This will help continue to spread awareness and understanding of the day-to-day life of this disease and the impact it has on those living with it and their loved ones.
2. Be able to submit our documentary to film festivals all over the country in hopes to change how the medical field addresses gastroparesis. To educate doctors and give them the tools to help improve the quality of their patient's lives. Not to mention the opportunity to bring others who are living with this condition together for added support.
What is gastroparesis?
The American College of Gastroenterology describes GP as the following; Gastroparesis literally translated means “stomach paralysis”.
Gastroparesis is a digestive disorder in which the motility of the stomach is either abnormal or absent. In healthy people, when the stomach is functioning normally, contractions of the stomach help to crush ingested food and then propel the pulverized food into the small intestine where further digestion and absorption of nutrients occurs. When the condition of gastroparesis is present the stomach is unable to contract normally, and therefore can not
crush food nor propel food into the small intestine properly. Normal digestion may not occur.
How many people are affected?
New cases each year range from 200,000 to three million. A White Paper was published in 2003 called “Gastroparesis and Related Digestive Motility Diseases, a Medical Crisis.” shared statistics that was alarming, to say the least. Quoting from the paper, "Approx 10% of all diabetics suffer from more severe forms of gastroparesis (6). In the United States, diabetics make up 5.8% of the total population or approximately 15.7 million diabetics (Source: American Diabetes Association). The trends show that diabetes is on the rise in the United States.
This equates to approximately 1.6 million diabetics suffering from more severe forms of gastroparesis and these numbers are growing."
For comparison, the prevalence of inflammatory bowel disease (Crohn's and colitis) is149 people per 100,000 (Source: Crohn’s and Colitis Foundation). For the entire US population, this represents approximately 450,000 people. A rare disease as defined by the US government is any disease afflicting 200,000 people or less. (Source: NORD).
Lauren share her story about living with Pseudo Obstruction
A conservative estimate for numbers of Americans suffering from gastroparesis would be three million, (1.6 million diabetics and an equal number of idiopathic gastroparesis patients.)
Idiopathic gastroparesis shows a strong female predilection with onset occurring in the prime of life, at 18 to 50 years of age. It seems that females are affected the most with this disease. The are males that are diagnosed with GP but the numbers are small compared to women. The greatest area of concern is small children and teenagers. Teenagers are often misdiagnosed as having eating disorders because blood work does not show anything to indicate challenges related to digestion, only specific tests to confirm the disease. This process can take years if the right doctors are not found who are familiar with the disease.
What is the treatment?
At the present time there are few medications available or are approved to treat gastroparesis and their use can be limited by undesirable side effects and limited effectiveness. There are invasive surgeries that involve electrical stomach stimulators and different types of feeding tubes. This is not ideal. It is the only answer at this time to keep people alive and their quality of life is very poor.
The cost to a person with this challenge
In 2003 the average cost for one gastroparesis patient was $85,000 a year for hospital-based charges alone.
This cost does not reflect enteral/parenteral feedings, home health care, time lost from work, medications, special formulas and supplements, dressings, and infusion pumps (if enteral/parenteral-dependent), etc. (8). Can you imagine the cost today 12 years later?
Quality of life
The impact on quality of life is devastating. One must also recognize that the idiopathic group is often initially misdiagnosed and provided inappropriate treatments. For the severely intractable vomiting experienced by gastroparesis patients, some ill-informed specialists might initially recommend a total gastrectomy (which often does not resolve symptoms and only further devastates the quality of life).
Kimberly shares the heartbreaking change of the quality of life for her.
Patients frequently run the gauntlet of an implied psychiatric overlay to explain the symptoms of their severe neuro muscular digestive diseases. For children
who suffer from idiopathic or acquired motility disease, even less scientific knowledge is known.
Munchausen by proxy is often a differential diagnosis that families must struggle against in their desperate attempt to halt their child’s suffering of nausea,
vomiting, abdominal pain, and weight loss.
Very small children can suffer from bouts of vomiting, frequent retching, and tears of discomfort. This suffering brings a weight of despair to parents unable to comfort their child. There is nothing more difficult than watching your child struggle against these horrible symptoms and fail to thrive.
Adolescents, who need enteral/parenteral, or nasal duodenal/jejunum nutrition in order to stop the downward spiral of malnourishment and to stabilize dramatic weight loss, must also deal with the acute psychological impact of changes in body image, a particularly sensitive issue for this age group. Further, school-age children and adolescents who would normally be learning socialization skills, miss out on this aspect of their growth and development. Isolation caused by unremitting symptoms and malnourishment impacts their mental health. This age group is especially vulnerable as they struggle for acceptance by, and lack the energy to keep up with their peers. Older adolescents experience continued failure with socialization since developing relationships are constantly interrupted by unpredictable symptom flare-ups or hospitalizations.
Chronic illness and the daily battle against symptoms are emotionally exhausting. Emotional reserves are also spent due to the sleep-pattern disruption caused by unrelenting symptoms of heartburn, esophageal spasms, nausea, vomiting, abdominal pain, and abdominal distention.
These patients are also faced with the hopelessness that comes from being told by their specialist that nothing more can be done for them. With so few treatment options, the specialists are also frustrated and feel powerless.
WE OFFER HOPE!
In 2014 Kathleen Atkins and I (Chalyce Macoskey,) created a Facebook group called Healing Gastroparesis Naturally, offering supportive ways to improve the quality of life, based on my own experience, my clients and years of education and research with holistic therapies.
I found that when you support digestion with essential oils, fermented and nutrient dense foods and meditation that you could improve the quality of life for people challenged with GP and many other health challenges.
The results have been remarkable. Today we have nearly 2,000 members. We have helped hundreds of people, giving thousands of dollars of our own money in care packages to improve the quality of life. Our members support each other and pay it forward when they can. We have created a community that gives hope, ideas and encouragement in a world where living with illness can be quite scary and lonely.
In June of 2015, a research was granted to Wisdom by Nature through The Association for the International Research of Aromatic Science and Education (AIRASE) Foundation. The purpose was to evaluate how essential oils can support digestion to improve the quality of life for people challenged with gastroparesis. We are excited to announce that our study was a success and will soon be published in the journal Holistic Nursing Practice, The Science of Health and Healing!
We now have the amazing opportunity to present what we are doing at the 2017 American Holistic Nurses Association (AHNA) annual conference in June. With your help, we will be able to reach over 500 health professionals from around the country and share not only just how devasting gastroparesis can be, but also share the results from the research and what options are available to finally help give people who are suffering hope.
A book is also in the process of being published, written by myself and Stephanie Torres, who has lived with a GP for 8 years. The New Approach to Healing Gastroparesis and Digestive Challenges shares stories and ideas to give others hope and a place to begin when looking for how to live their best with this devastating disorder.
Thank you for your generosity and support!
Statistical references shared from the White Paper “Gastroparesis and Related Digestive Motility Diseases, a Medical Crisis.”
