Latest EHE News, Events & Research

The Pledge Q1 2022

The Pledge: Edition 28, Q1 – Jan-Mar, 2022

June 8, 2022

Together, the US, UK, and Australia EHE foundations team up to strengthen the force against EHE. This group provides a quarterly update, which is led by the UK and includes research news, patient and fundraising stories, and much more! Click here to view the most recent edition of our online EHE newsletter, The Pledge.

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Scanxiety

Scanxiety

May 23, 2022

What is scanxiety? Scanxiety describes the apprehension felt by people with cancer as they wait for their next scan. It’s a form of anticipatory anxiety. Scans are like emotional roulette. You’re trying really hard not to worry about the unknown, but your body has other plans. Recognizing the Signs of Scanxiety Symptoms of scanxiety vary […]

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Carmela Valdivieso

May 16, 2022

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 […]

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Linda Beaulieu

May 13, 2022

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 […]

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Tonja Pektas

April 28, 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 […]

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Rick Harrington

April 27, 2022

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 […]

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Michelle Hughes

April 22, 2022

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 […]

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Martha Iglesias

April 18, 2022

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 […]

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Katherine Czyzewski

Katherine Czyzewski

April 15, 2022

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 […]

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Melissa McPherson

Melissa McPherson

April 11, 2022

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 […]

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