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MISSION

The  Epidermoid Brain Tumor Society is a support group allowing  those who share a common diagnosis to come together, share ideas, coping tips, experiences and most importantly, to exchange emotional support. The primary goal of EBTS  is to ensure that no one living with the disease or condition that the group serves ever has to feel alone again. 

 

EBTS can also offer:

  • physician referrals to new patients
  • help one another to weed through inaccuracies in the vast medical information that exists on the web and in the literature.

EBTS’s primary  goal is to launch global campaigns for epidermoid brain tumor awareness and to raise funding in search of a cure.   The Internet has opened new pathways for those seeking to become part of the support group experience.  Patients can now connect with others from across the globe to share mutual support,  news of important advancements  or therapies , all from as well from the comforts of home.  Welcome to the Epidermoid Brain Tumor Society.

Join our private Facebook group. 

 

Participate in our first research project. This is an amazing opportunity for those of diagnosed with an Epidermoid Tumour to learn more about the effects.

 

JUST DIAGNOSED?

Find out what you should ask a surgeon.

Learn more about what an Epidermoid Brain Tumor is.

And of course, join our Facebook group. Our tumor is rare. As a group we learn so much from each other.

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Latest Blog Entries

  • Participate in the First Epidermoid Tumour Study!

    We are currently conducting a study on epidermoid tumours. The purpose of this study is to find out as much as we can about epidermoid tumours and particularly the neurological and neuropsychological effects. The study consists of a questionnaire about your tumour, symptoms and other connected issues. Your name, date of birth or other information […]

  • Jack is Back! Rockstar, Photographer, Author – and Epidermoid Brain Tumor Survivor

    Jack Eadon is an incredible individual with an amazing story. August, 2010, his fifth and final surgery, Jack has been unable to swallow and is tube fed. Diagnosed at an early age in 1978, Jack had 4 surgeries before his epidermoid brain tumor was completely excised in 2010. His battle with the epidermoid brain tumor […]

  • Colin Brittain, a Retired Deep Sea Diver, Author, and Survivor

    Colin Brittain, a long term UK member of the Epidermoid Brain Tumor Society , has lived in the picturesque town of Whitby for over two decades moving there for the rich sub aqua diving possibilities. As a BSAC Advanced Diver and Open Water Instructor, he enjoyed introducing students to open water diving among the many […]

  • Gail’s Story

    I grew up in a suburb of Charleston, West Virginia, US. My childhood was frequently fraught with headaches but migraines run in my family, so no one thought much about this. As I filled notebook after notebook with thoughts and dreams, two themes emerged: I wanted to live in the South and I wanted an […]

  • Luis Velasquez, Our Own Endurance “Junkie”

    Luis Velasquez joined the Epidermoid Brain Tumor Society just before his second surgery for the epidermoid. EBTS members are getting use to Luis’ way of “getting on with life” which is to have the most positive outlook and supports our members with his cheerful one liners full of advice. We are lucky that he stays […]

  • Marcus

    Dr Charlie Teo on Tuesday (16 July, 2013 ). Marcus was very proud to stand beside Australia’s most trusted person. Dr Teo and his team are very impressed with how well the surgery went and how well Marcus has healed – not sure if you can spot the scar in his right eyebrow. While Marcus looks tired in […]

  • Journey with a Caretaker

    Usually we (the patients) tend to focus on our medical needs and forget about the person that is standing quietly off center, our caretakers. We know of many caretakers that have “walked the walk” with us and still do. They are there for us 24 – 7 meeting all of our needs. They are waiting […]

  • Do risk intolerance, malpractice fear drive head CT use?

    (NOTE: Epidermoid brain tumors do not show up on head CTs.  MRI with contrast is the only way to detect – Admin) Conventional wisdom and prior findings hold that physician risk intolerance and malpractice fear fuel CT ordering; however, recent research disputes this assertion and suggests variations in head CT use in the emergency department […]

  • Comparison of Quality of Life After Transnasal Endoscopic vs Open Skull Base Tumor Resection

    (NOTE: Not all Epidermoid tumors can be removed via transnasal endoscopic surgery. Some of our members have had success but tumor location will decide what approach is best. – Admin) Design Retrospective survey. Setting University-affiliated medical center. Patients The study included 78 patients who underwent surgery for removal of skull base neoplasms through an expanded endoscopic (n = […]

  • Surviving a Benign Brain Tumor

      Dr. John S. Cheung had surgery for his epidermoid brain tumor on November 25, 2013, at National Neuroscience Institute in Singapore.  His neurosurgeon,  Wai-Hoe Ng, MD,  is Deputy Director of the National Neuroscience Institute and Head and Senior Consultant at the Department of Neurosurgery (SGH and TTSH). He is also the Deputy Chair of […]