Lack of information – it’s something that all EHE fighters have to deal with. The first thing that many of us learn upon being diagnosed is that the medical community’s knowledge of EHE is very small in comparison to what is known about lots of other cancers. We’ve all certainly had our own troubles with locating medical providers that have experience with, or even knowledge of our rare cancer. Most of us have come across doctors whose eyebrows shoot up in surprise or furrow in confusion when we’ve mentioned the long, almost unpronounceable name of our disease. Even after we’ve gathered ourselves a team of experienced providers, there is still so much that we need to learn. At the moment there is no way for our doctors to know when we should move forward with treatment or just “watch and wait”; no standardized treatment protocol; and not even an idea of how to predict how aggressive our case is likely to become.
Therefore, one of the primary goals of the EHE Foundation is to help patients, their loved ones and caregivers, find easier ways to locate and collect the information that we all desperately want. This goal has led us to create the EHE Encyclopedia. The EHE Encyclopedia is an update and revision to the H.E.A.R.D. Registry, a collection of patient histories written in the patients’ own words. The H.E.A.R.D. Registry was tirelessly collected and maintained by Cynthia Pollack starting in 2004, as she fought for the life of her son Danny who sadly lost his battle with EHE in September of 2008. The Encyclopedia contains patient locations, the names of experienced medical providers, as well as treatments and their outcomes, which should add to our understanding of EHE. Not only will this support patients and their loved ones in their efforts to learn more, but it will hopefully also help doctors and researchers solve some of the mysteries of our disease.
Thank you so much for taking the time to read through what we’ve collected. We intend to regularly update the material contained in the Encyclopedia. If you are a patient that would like to have your story included or added to in the next update; or you wish us to act as an intermediary to help you get in touch with a particular registrant, please email Encyclopedia@fightEHE.org for further information.