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!
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.
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
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!
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.