Lots of you have been asking about what IPPFE is which I've previously made a real dog's dinner of explaining in the absence of any real information about the disease online bar very dry research papers that paint a pretty bleak picture.
However the team at the Brompton have now put together some info on the disease that does a pretty good job at explaining what it is and what some of the main symptoms are: rbht.nhs.uk/patients/condit...
the page struggles to explain what causes IPPFE, how it's treated or is likely to develop because they don't know enough about it.
That's not their fault as the condition is really rare. The absence of cases means that they haven't been able to obtain enough data to make generalisations or establish patterns. As a result treatment remains trial and error.
This will remain the case unless we can get more IPPFE patients together to help the doctors establish trends and patterns that will inform future treatment protocol.
With that in mind I'm looking to track down others with IPPFE so that we can help doctors understand more about the disease and it's patterns which maybe, just maybe might give us a fighting chance at stopping the progression of the condition.
If you know anyone that has IPPFE that would be willing to help out then please do share this post with them and encourage them to get in touch. Thanks in advance BLF family!