Sharing Your Experience by Being There for Other GIST Patients and Caregivers

GIST Peers TalkingLast month, we posted information on our new program to support our members. The GIST Peer Program is an additional support system to help patients and their caregivers through a very difficult time in their lives. Why? They may just be finding out they or a loved one has GIST, or they are experiencing a recurrence and they want to be able to talk with someone.

Many times, whether it’s at a Life Fest, GDOL, or other LRG events, we have heard that patients feel alone. Caregivers, too. GIST is such a rare disease, and they feel like there’s no one else out there that’s experiencing what they are. Who can they turn to for that extra support?

Our GIST Peers complement what a State Leader might be able to offer. The State Leader is there to organize support meetings and bring groups together to unite the GIST community so patients and caregivers know that they are are not alone. The GIST Peer is there for that phone call, “Hey, I’m having a rough day. I just heard from my doctor. I just had this test. I’m feeling afraid and alone. I just want someone to hear me and talk to me.” The GIST Peer will be there for that person and in those situations. Our GIST Peers have walked this journey; they know it.

A rare disease like GIST is more isolating for people because there are just not many people diagnosed. GIST is unlike breast cancer, which unfortunately encompasses a much larger group and therefore garners more support, education, and research. Anywhere you go, you can always find at least one person who has been affected by breast cancer. GIST isn’t like that, and it’s especially difficult in more rural communities where patients and caregivers are struggling to find people who are going through the same things.

Santy DiSabatino, our Volunteer National GIST Peer Director, is a volunteer with his own GISTory. You can read Santy’s story on our website (bit.ly/SantyDiSabatino).

Santy is retired and when he applied for a volunteer position with The LRG we knew that his background in education and a passionate voice for patient advocacy would serve this position well.

How Can You be Matched with a GIST Peer?

When someone fills out a membership application, they can request to have a GIST Peer or at any time someone could just go online to our GIST Peer Program page and request a Peer (bit.ly/GISTPeerProgram). At this point in time, your GIST Peer might be someone out-of-state, but as our volunteer roster grows, we expect to be able to match up peers with patients and caregivers in their own state. Patients will be matched to patients, caregivers to caregivers, as well as those with similar circumstances, considering age, mutation type (ie. Pediatric), or even those who lost loved ones that need support.

Santy DiSabatinoI am very excited to join this Life Raft Group initiative as the National GIST Peer Director. As GIST patients, we understand how stressful and confusing living with GIST can be. I know how support from others can make a difference in their lives.  I look forward to working with the mentors who will volunteer their time to support others in our GIST community.

I saw this quote today on the internet and thought it fit perfectly with supporting this important initiative. The quote reads, ‘Never underestimate the difference YOU can make in the lives of others. Step forward, reach out and help. This week reach out to someone that might need a lift’ .

Santy DiSabatino, LRG Member & Volunteer National GIST Peer Director

Do You Have Personal Experience with GIST as a Patient or Caregiver?

You can become an LRG GIST Peer and provide support, empathy, and understanding to people with GIST or their caregivers, family members or a close friend. The LRG exists to reassure GIST patients and their caregivers that they are not alone on their GIST journey. Our goal of supporting the community does not stop if patients lose their battle with this disease. The LRG is also seeking volunteers who have lost a loved one to GIST and are willing to offer support to others.

We look forward to serving our members in this capacity and encourage those with the desire to help other GIST patients and caregivers to apply via the application at: bit.ly/VolunteerLRG.