Month: April 2022

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 […]

What do you wish others knew about EHE “I wish people knew that even though it is rare, there are humans behind this diagnosis. Though I personally am not exhibiting symptoms at this time, scanxiety is something that is a constant cloud over our family. The unpredictable nature of EHE is difficult and different for […]

What do you want others to know about EHE? “I want people to know that EHE can be very frustrating. I say this because EHE is so different for each of us. What works for one person, may not work for the next. It also can cause lots of anxiety for us as we wait […]