Founded in 2009, Lynch Syndrome International (LSI) filled a tremendous void in the arena of hereditary cancers by providing networking, organization, and a voice that was greatly needed by those affected with Lynch syndrome (LS), a genetic condition. In 2008, when founder Linda Bruzzone was diagnosed after sustaining late-stage colon cancer, internet information on LS was fragmented and decentralized. “I felt so alone. Nowhere could I find others online. It was frightening, as though we didn’t exist. Nowhere was there a support system for those with Lynch syndrome.” Today, LSI support is available at www.lynchcancers.com. A hub of activity, the website provides public awareness, support, and education to tens of thousands of individuals globally.
Having no gender, ethnic, or cultural preferences, the extremely aggressive tumors of Lynch syndrome target families, predisposing them to a high risk of cancer at a younger-than-average age. Children of those affected possess a 50% risk of acquiring LS. Those diagnosed face up to an 85% lifetime risk of colon cancer. A 65% risk of contracting endometrial cancers exists for women and higher-than-average risks exist for contracting other cancers including those affecting the stomach, pancreas, kidney/ureter tract, hepatobiliary tract, gastric tract, prostate, ovaries, gall bladder, brain, small intestine, and the skin. If that isn’t enough, it is not unusual for those with LS to contract more than one primary cancer in their lifetime.
Support for those affected, education of medical professionals and the public, assistance for research endeavors, and public awareness are key missions of LSI. According to Johns Hopkins, only 5% of the 600,000 at risk in the United States are diagnosed. The rest are left vulnerable to cancers that continue through generations—with family members dying young of an often devastating death.
However, hope lives and overpowers the never-ending sense of uncertainty for those living with LS through diagnosis via genetic testing. Annual screenings for cancers are then prescribed, and polyps and tumors are often detected early and removed or treated before becoming life-threatening.
LSI launched its comprehensive website in March 2009. The site addresses the many questions posed by those affected by LS, including medical information, basic tips on cancer survival and care, and even an online library with up-to-date studies on LS.
Social networking is facilitated through Facebook and Twitter. For the affected youngsters, a site was recently introduced on Tumblr. These sites provide a place for survivors, “previvors,” and others to interface with one another and share experiences in how they positively manage their lives. Knowledge and involvement with LS advocacy, coupled with interaction with others who are thriving, often creates empowerment.
Numerous resources are accessible online or by phone, where live 24-hour support is also available. Finally, a “buddy-to-buddy” program is available by email, providing the opportunity to interact anonymously with someone with LS.
In this family, 6 of the 9 adults pictured have Lynch syndrome.
Grassroots public awareness efforts occur within the international community through LSI’s many volunteers. In 2010, during the Governors’ Initiative, 12 US governors declared Lynch Syndrome Public Awareness Day in their respective states. The effort is expected to be much larger this year. In the past 2 years, LSI has met with hundreds of state and federal legislators. Tens of thousands of awareness brochures and “Embrace Life” bracelets have been distributed to the general public. Volunteers actively work at “Relay for Life” events and are interviewed by local newspapers as well as radio and television shows. Globally, hundreds are blogging about their experiences.
LSI provides outreach to medical professionals, in person, by mail, phone, and through exhibiting at medical conferences. It offers complimentary speaking services to organizations and institutions. Additionally, LSI’s Website provides essential diagnosis and management information for medical professionals.
Currently, LSI assists in recruiting subjects for clinical trials. A portion of donations is dedicated to research endeavors.
The success of LSI can only be defined by the commitment of the volunteers and measured by the assessment of the persons they serve:
“When I first saw your website, I broke into tears. I felt alone and different. Now I know there’s hope and I am one of the lucky ones. Thank you for being a beacon.”
LSI reassures individuals that options exist, and that for those with LSI, it is no longer necessary to live with insurmountable uncertainty, as hope is alive.