For those who have had surgery for infant pyloric stenosis (“PS”) the online social media and discussion forums have been a Godsend.
Being a 1945 PS baby, for most of my life I was able to compare notes with only a very few others who share my PS-related joys and sorrows. But worldwide networking has arrived and flourished since the advent of the internet in the 1990s.
Parents now compare notes on their baby’s PS, the surgery, and what followed. Many regard it as the most traumatic experience they’ve ever had, too often made worse by the lack of awareness, sloppy diagnostic work, and even arrogance of their doctor. Many tell their tale or join a Facebook Group hoping to increase the general awareness of PS, the most common condition of infancy which is usually dealt with surgically.
Survivors are typically keen to break out of their sense of aloneness. We can now compare our feelings over the surgery and scar: we had no say and have no memory of our first crisis, but we can now meet others with the gnarly or deeply sunken scar which most of us hated, especially in our earlier years.
Many PS survivors also want to learn about a list of ongoing problems which some have and which seem to be related to their stomach operation, although doctors don’t agree or want to know about this. After all, the paediatrician and the surgeon assured our parents that the operation was easy, quick, almost always immediately successful, and that there are no long-term problems after PS and the surgery. “If only!”
Facebook is the most accessible and popular address and has at least six large and small PS Groups and they are actively used by both parents and PSers. Unlike web forum sites, Facebook Groups can only be accessed by registered users; they just need to type “pyloric stenosis” into the Search box to get a list of Groups.
Forum sites like Experience Project, MedHelp, Patient UK, and Topix each have one or more discussion groups for PSers. These four links are to each site’s most popular discussion on PS matters, and a search there will usually give you links to other discussions on that site.
Readers interested in any of the PS-related issues are to be encouraged to “visit” some of these online locations. Consider sharing your story and help increase the public and medical world’s rather too common ignorance of PS!
In the next few posts I want to pass on some samples of the important information that is shared on the pages of some of Facebook’s PS Groups.