7 Comments
Jun 27, 2023Liked by Leigh Kamping-Carder

One thing I would have liked too know when I was a kid if I really did have asthma or If it was pah the whole time

Expand full comment

This was so enlightening! I've had a lapse in care, never met another person with my defect, and am only just learning -- at almost 36 years old -- that pregnancy and other fertility measures may be more complicated or risky for me. Research and outreach like this is so needed!

Expand full comment
author

I’m so glad to hear that, Shari! Thanks for reading.

Expand full comment

One way patients lost to care can find out about the CHI surveys is to regularly post them on social media channels - Facebook, Twitter, Instagram, especially sites that women visit because they tend to be good at sharing. Ask “Did you or someone you know have heart surgery as a child?” And include the link. They may see the post at a time when they feel something may not be right with their health but not realize it has to do with their CHD, which they think (or were told) was cured.

Expand full comment
author

Good advice!

Expand full comment

I forgot to say that sharing via CHD patient groups and organizations is another great way - there are about 80 worldwide. Depends if they want global input or N American.

Expand full comment
author

It’s a global effort! Wow, had no idea there were that many organizations.

Expand full comment