The EHE Foundation

What do you want others to know about EHE? “Getting to know other cases through the EHE Foundation, I realized that, even though all cases are very different, uncertainty is something we all share. I have my hopes on the community built around EHE, where I no longer feel alone and trust that there will […]

What do you want others to know about EHE? “EHE changed how I see life. I received the diagnosis of EHE one year ago, lung removed and a heart bypass. It was gone! But then it returned this Christmas on my trachea. I am now on medication and hoping that the next scan will be […]

What do you want others to know about EHE? “The mental battle with EHE is monumental! The watching and waiting and the not knowing what it’s going to do in my body! That new pain in my ribs….could it be EHE? That weird reaction I had to something…could that be caused by EHE? I have […]

What do you want others to know about EHE? “I was completely shocked when I received my “stage 4 lung cancer” diagnosis. I only had a slight cough–how could that be? But then the doctors were not sure what kind of cancer it was, so they started to perform different biopsies. It took several weeks […]

What do you want others to know about EHE? “Being diagnosed with EHE mere weeks after the birth of my third child was shocking and soul crushing. My head filled with so many negative thoughts after hearing “stage 4,” “metastatic” and “incurable.” I’m a 35 year old, healthy female…or so I thought. I read a […]

What do you want others to know about EHE? For me EHE is learning to live with the uncertainty, pain, and chronic fatigue. In the same day you can feel really well and then suddenly feel really bad. Although you may feel perfectly fine, the pain can hit you like a hammer. It’s also lonely […]