Not Alone

If I haven't already told you about seeking out social network connections to learn about and cope with your disability and/or serious illness, I need to do it now.  Going through a traumatic medical ordeal can be isolating and overwhelming, but finding a community of others surviving similar circumstances can bring hope, comfort, and even vital information that could help your own healthcare team.  

One especially isolating factor for me has been the sheer rarity of this particular type of cancer.  At less than 1% of all cancer diagnoses, it's easy to feel like there's no one out there who even knows enough about it to give you a fighting chance.  Fortunately, there is a Facebook group for patients and family members with Epithelioid Hemangioendothelioma, and if there's one for such a rare disease as this, there's probably a group or many groups for you, too.  

The group has been absolutely invaluable to so many of its members.  In that community we finally find people sharing similar experiences, fears, and treatments to us.  Perhaps most importantly, in that community we are finally able to compile real data from actual EHE patients to help inexperienced patients and their sometimes equally inexperienced oncologists develop a treatment plan with the best possible chances of success, and actively help researchers who are trying to understand the underlying cause and many different ways this disease presents.

If you have been diagnosed with a serious medical condition, are injured and/or disabled, I strongly encourage you to seek out your own group of similar individuals for support.  You must always be mindful, however.  Be careful to protect your most personal and confidential data, remember that no matter how similar, no two medical situations are ever exactly the same, and don't allow yourself to be completely overwhelmed in the deluge of information you will receive from other patients and supporters.  Read with skepticism and critical thinking, and above all use the information to create meaningful and thorough dialog with your healthcare team - no amount of accurate anecdotal evidence from others can replace the importance of clear, detailed communication with your own doctors.  

Used properly, a patient community can be a precious resource for treatment ideas, understanding, empathy, ties to financial and transportation assistance, and to finally not feel so alone in what you're going through.  I hope you seek that camaraderie in your preferred social venues, be they online, faith-based, etc.

You can find the EHE group at https://www.facebook.com/groups/EHEcancer/