This is the leadership update from January's e-newsletter.
“I never knew there was anyone else out there like me.”
If I had a nickel for every time I have heard an adult congenital heart survivor say this, I could fly to Tahiti and back. Every day, congenital heart patients tell us that meeting others who share their struggles transforms their lives. These “meetings” might be in person, through our Facebook page, on our Discussion Forum, or through an ACHA Blog post. Because of the large number of defects, treatments, and health impacts, each member story is unique. Each offers a different window to the wide range of experience involved in having a heart defect.
This month, ACHA has launched a new tool to encourage each of you to share your story. The Express Yourself tool is a new online feature that allows every member of ACHA to upload their story and picture. This can be about your own journey with CHD, or the story of your journey managing your loved one’s CHD journey. Each posting will be searchable by defect and health issues, so that other CHD patients and family members can search for others managing their challenges. I urge each of you to take a moment to submit your story to ACHA, and help others with CHD know that they are not alone.
By sharing your story, not only will you help individual patients, but you will also help the CHD community as a whole. Learning more about our members’ experiences helps ACHA understand the continuing challenges facing long-term survivors of CHD. ACHA was founded in response to member stories. Using what was then new web-based technology, adults living with “children’s heart problems” began to trade stories of their struggles via email and on discussion forums. Slowly, these individual stories coalesced into a larger story: The lack of resources and poor quality of care available to heart defect survivors once they left childhood. ACHA’s advocacy, support, research, and education were built directly on the stories shared by our first member community.
So we want to hear from you! I look forward to reading about the unique ways that each of you manages your life in “the Funky Heart Club.” Together, all of our stories can continue to make a difference for the millions of Americans now living with congenital heart defects.