July 13th is GIST Awareness Day!

Did you know that July is widely considered to be Sarcoma Awareness Month? During this month, many stakeholders – from patients to researchers – aim to raise awareness of sarcomas, rare cancers which form in the bones or soft tissues of the body. One form of sarcoma is gastrointestinal stromal tumor (GIST). That’s why GIST Awareness Day takes place during Sarcoma Awareness Month. GIST Awareness Day, celebrated on July 13th, aims to teach more people about GISTs, as well as raise awareness in oncological settings to improve the diagnostic and care process.

How to Raise Awareness: A Primer from the Life Raft Group

The Lift Raft Group (LRG) is an organization which aims to improve the quality-of-life and survival of those with gastrointestinal stromal tumors through research, advocacy, education, and support. On the organization’s page about GIST Awareness Day, LRG explains that this year’s GIST Awareness Day is centered around storytelling. In fact, the theme of this Awareness Day is “Time to Tell The Stories.” Through this, LRG hopes to teach more people about the organization’s goals, raise GIST awareness, discuss research and treatments, and talk about mutational genetic testing.

GIST Awareness Opportunities

If you would like to get involved in raising GIST awareness, there are multiple ways to get started:

  1. Tell your story. If you have experience with GISTs, share your story! You can do so on social media platforms or share through an organization like LRG. If you would like to share your story on social media, make sure to use hashtags like #TimeToTellTheStories and #GISTAwarenessDay. Alternately, if you’d like to submit it to LRG, please email your story to Mary Garland at [email protected]. You may also submit a story on Patient Worthy!
  2. Support others. This could mean liking, sharing and commenting when you see stories about GIST on social media. Supporting others could mean reaching out to organizations like LRG to see whether you could volunteer. It could just mean making a safe space for others to share their story with you.
  3. Share flyers. The LRG has a great flyer going over what the organization does, GISTs, and the type of resources offered. Why not share these with your local doctors or hospitals to help raise awareness?
  4. Donate or hold a fundraiser. Interested in donating to the LRG? You can do that here. You can also get creative and hold a fundraiser in your local community!

What is a Gastrointestinal Stromal Tumor (GIST)?

A gastrointestinal stromal tumor (GIST) is a type of soft-tissue sarcoma which forms in the gastrointestinal tract. In many cases, GISTs will begin in the stomach or small intestine. However, in rarer cases, these tumors may form in the rectum, esophagus, or colon. Many GISTs form because of spontaneous KIT or PDGFR gene mutations. While other genetic mutations can play a role in GIST development, some mutations are still unknown. These mutations cause unregulated growth of interstitial cells of Cajal. Normally, these cells help play a role in the autonomic nervous system, but when these gene mutations cause the cells to multiply out of control, a tumor can form.

Typically, GISTs are found in those between ages 40-70. When symptoms appear, these can include:

  • Nausea and vomiting
    • Note: Those with a GIST may vomit blood.
  • Abdominal pain or swelling
  • Unintended weight loss
  • Bloody stool
  • Feeling of fullness
  • Anemia (low red blood cell count)
  • Difficulty swallowing
  • A mass in the abdominal area
  • Fatigue and general malaise/weakness
  • Appetite loss
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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