Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.

Share a Video of Your Story with ACHA!

Have you or your family been affected by congenital heart disease? Are you the relative or friend of someone diagnosed with a heart defect?

We want to hear from you!

We know that you have a story to tell about your experiences living with congenital heart disease. We want you to turn on your video cameras and share your stories of living with, or having a loved one who has, a heart defect. You can talk to the camera, you can perform an interpretive dance, you can create a stop-motion animation – be as creative as you like! Simply select one of the following topics, record a video of no longer than 2 minutes, upload it to a public video sharing site like YouTube or Vimeo, and email the web link to info@achaheart.org. Your video will help increase awareness about the lifelong journey of CHD, and who knows? You may just be the next YouTube star!

Before you read the guidelines below, hear what other adults have to say about their experiences living with CHD. Join the conversation and contribute your own video!

The videos linked to on this page are the creation and property of the individual(s) featured. The opinions expressed in these videos are solely those of the individual, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by these videos.

The contents of these videos are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.


Person Living With a CHD:

  • Tell us what living with CHD is like for you NOW.
  • What was the most helpful thing a doctor or family member ever said to you?
  • How do you take charge of your own health? Did anyone teach you how to manage your health care? Have you faced any challenges?
  • Has your congenital heart disease impacted what you have chosen to study or do? Did any of your doctors or family members advise you to pursue or not pursue a certain field of study or career?
  • Do you take your CHD into account when you make plans for the future? How?

Relative/Friend of a person living with a CHD:

  • What was it like to find out that your child has a heart defect?
  • How has your loved ones’ CHD impacted you and your family?
  • What do you wish other families or friends knew about having a loved one with a heart defect?


  1. Steps:
    a. Choose one or more of the topics.
    b. Record a short video describing your experience with the topic(s) chosen - video length may be no longer than 2 minutes.
    c. Upload the video to a public video sharing site like YouTube or Vimeo.
    d. Send the link to your video to us at rphillippi@achaheart.org.
  2. This is not a contest. Videos will be reviewed for individual content that is appropriate and relevant to the issues as described and on technical quality. In the future, we may recommend videos to the CDC for inclusion in an upcoming project.
  3. You own your video(s). We simply ask for your permission to link to them or “like” them on our own YouTube page. Please only send original video created by you (in other words, don’t plagiarize!) that has not been displayed elsewhere.
  4. What you DO is up to you, but here are some suggestions to making a great video (as well as some “don’ts”):
    a. Speak clearly; be sure your “stage” is well-lit so we can see you.
    b. Stay focused on the topic you have chosen. How you address that topic is up to you.
    c. Don’t just tell us about what kind of defect(s) you have or what surgeries or procedures you’ve undergone – tell us about YOU and why we should care!
    d. Don’t use lots of technical or medical jargon.
  5. If the video(s) contain material that is obscene, hateful, offensive, slanderous or that promotes bigotry, racism, hatred, or harm against any group or individual or promotes discrimination based on race, sex, religion, nationality, disability, sexual orientation, or age, we will not be linking to or “liking” your video, for obvious reasons! Additionally, we will not associate our site with videos containing profane language, violence or weapons, sexually explicit content, or personal attacks on people or organizations. Let’s keep it polite and PG, ok?