Having had PS very early in my life and struggled with some of the possible after-effects ever since, I have studied the disease for many years and blogged about my discoveries for almost two years.
Readers of my blogs here (as well as comments elsewhere) have asked me several times where they might direct some funds to further medical research into PS – and I believe with considerable justification.
Both parents and patients often have questions about or experiences with PS that cry out for a clear answer or sound advice. Many of these people report their frustrations on the web: they are all too often fobbed off, spoken to with condescending dismissal or bland non-answers, or with attempted information which they later discovered was incorrect or inadequate, or by kind reassurance which they later found to be ill-founded.
Some of the questions about PS that need more research or are often dealt inadequately are –
What causes this weird condition?
Can PS be avoided if it’s in my family?
How does the genetics of PS work? If I had PS will my baby?
When PS strikes can surgery be avoided?
How is PS best treated?
Are there after-effects of PS and of surgery on a tiny baby?
How can the risk of after-effects be reduced?
How will the scar affect a pregnancy?
Is there a link between PS and other conditions of infancy or later life?
1 Because PS is quite common in the “old world”, has been recognised for well over a century, and has been treated with a rapidly falling death-rate now for a century, we know much, much more about it than 100 or even 50 years ago.
2 Despite this, it may seem surprising that many of the above questions have not been answered fully or with certainty. Many are too often met with sheer ignorance, or answered incorrectly or simplistically.
3 So many of the medical journal articles and reports dealing with PS examine a subject area that has been reported on many times by many teams. One wonders how many times pediatric surgeons need to be given statistics and pros and cons for the several techniques of PS surgery or told about the pros and cons of imaging as a diagnostic tool.
4 Only a few attempts have been made to coordinate and compare the results of similar studies to arrive at a more significant set of conclusions.
5 I have not found even one organisation devoted to research this most common of all the conditions of infancy that require surgery in the first few months of life, or to gathering and coordinating worldwide PS research projects.
6 However, I have found one website, RightDiagnosis.com, which offers an information exchange on the existence, aims and needs of current research projects dealing with PS (click on this link to have a look).
7 Some of the people affected by PS as patients or as parents have the motivation and the means to contribute to a well-run medical research organisation. Such bodies exist for many of the more serious conditions of the heart, lungs or digestive system, but it seems not for PS. If this is incorrect, please let this blogsite know by a Comment or just email the writer! We’d love to pass on any good news.