Raising awareness for rare diseases and conditions is important for many reasons. First, it helps to increase education and understanding around these rare conditions. Awareness also offers support to those affected, advances research, and contributes to drug development.
On July 13, it is time to highlight gastrointestinal stromal tumors (GIST) on the 10th annual GIST Awareness Day! This year’s theme is Thriving Together.
Using some insights from our partner The Life Raft Group, we’ll offer some more insights into what GISTs are, symptoms, and how you can take part in raising awareness to create a better world for patients.
What are Gastrointestinal Stromal Tumors (GIST)?
A gastrointestinal stromal tumor is a rare tumor that forms in the gastrointestinal tract; these tumors exist under the greater umbrella of soft tissue sarcoma. Most often, GISTs form in the stomach or small intestine, though they may also form in the esophagus, colon, and rectum. In many cases, GISTs result from spontaneous KIT or PDGFR mutations. However, doctors recognize that there may be additional disease-causing genes that have not been identified yet. GISTs typically affect people between ages 40-70, though they can (in rare cases) occur in younger individuals.
An estimated 5,000-6,000 new cases of GIST are diagnosed in the U.S. each year. According to the Life Raft Group, that is approximately 13 people per day; the organization even launched the Rare 13 campaign in 2013 to share this information, a precursor to the inaugural GIST Awareness Day. Surgery and chemotherapy are the current standards-of-care. Tyrosine kinase inhibitors and targeted therapies may also be utilized. Mutational testing after a GIST diagnosis is necessary to pick the correct treatment. However, some subsets of GIST do not respond to treatments. This is why continued research is necessary.
Symptoms of a GIST may, but do not always, include:
- Nausea and vomiting
- Abdominal pain and swelling
- An abdominal mass
- Early satiety (feeling of fullness even without eating a lot)
- Fatigue and general malaise
- Unintentional weight loss
- Bloody stool (or other signs of gastrointestinal bleeding)
- Anemia (low red blood cell count)
- Appetite loss
- Dysphagia (difficulty swallowing)
How to Contribute to Awareness
Whether you have GIST, or just want to support the community, there are ways that you can get involved for this awareness day. The more voices we have to uplift this community and what they face, and to contribute to advocacy, the stronger we are. So consider taking one of the following actions on or in support of GIST Awareness Day:
- Share your story. If you have GIST, consider sharing your story—whether that’s with your friends and family, your local community, advocacy groups, online, or through websites like Patient Worthy! But if you don’t have GIST, you can still help. Head to social media and share, like, and comment on the stories you see. You can use hashtags like #GISTAwarenessDay2023, #sarcoma, and #ThrivingTogether. The Life Raft Group also has customizable social media images for you to download!
- Educate. Unfortunately, rare conditions are often poorly understood by the greater public. Consider sharing facts or information about GIST with others. You can print out a fact sheet and deliver it to your local schools, businesses, or libraries. Or you can contact the media and ask them to run a story!
- Donate. Donating to the Life Raft Group provides resources to patients and families, as well as advances research. You can donate here.
