Pulmonary Epithelioid Hemangioendothelioma - EHE
My name is Alex and I have just been diagnosed with EHE. The local hospital is unable to help me, indeed most of them had never heard of the condition, and I have been referred to Christies Hospital in Manchester.
I have looked at several websites and to be honest most of them are written in medical jargon and very low on how EHE is caught, treated or of survival rates.
I would be delighted if anyone with EHE, or know of family / friends suffering from this condition, could enlighten me as to what treatments they received and how effective it was.
At the moment I have the usual dry hacking cough, lost a lot of weight and feeling tired most of the time, but I am going out on walks and shopping trips and gradually building up my strength.
Alex
FormerMember
Hi Alex,
Sorry i dont know anything about EHE...but i will say the Christie Hospital has such a fantastic reputation and im sure all your questions will be answered at your appointment. Sometimes when we google these things we get more confused cos we dont understand them...Have you asked your GP about this condition? they might be able to find something out about it for ya in the mean time.
sorry, I don't know anything about EHE either but I do know about the Christie having been treated there since Jan 2008. As Sue says, they'll have all the info you need and the nursing staff is fantastic. They may also be able to point you in the direction of other sources of information if you still want it.
