Craniopharyngioma Online Support Group

SUMMARY
The Craniopharyngioma Online Support Group was founded in 1996 and currently consists of over 400 craniopharyngioma patients, caregivers and medical professionals. Anyone who falls in these categories is welcome to join. Due to similarities in treatment and outcome, patients with Rathke's Cleft Cysts are also welcome. Group communication is by a private email list hosted by T.H.E. Brain Trust, a 501(c)(3) nonprofit organization specializing in internet based and patient oriented brain tumor support groups.

MEMBERS
The over 200 patients represented consist of around 50% children, 30% adults diagnosed as adults, and 20% adults diagnosed as children. Patient ages range from 2 to 73, while time since initial diagnosis varies from last week to almost 50 years ago. Members are primarily from the U.S., but around 15% are from Canada, the U.K., Australia, India and other countries. You may view detailed statistics as of 12/13/2002 . These will be updated periodically.

CONTENT
Messages are in English, and typically involve questions and responses related to medical, social and emotional issues experienced by those who currently have or have had a craniopharyngioma. The list averages 3 messages per day, but there are occasional periods of silence as well as periods of increased activity. Although all cases are different, there are many things they all have in common. Most members of the group are not medical professionals, but they have a vast amount of common experience that can help others with decisions that they and their doctors must make. In addition to providing information, this list is also a good source of emotional support.

Commonly discussed topics include:

There is no restriction on topics as long as they relate to craniopharnygiomas and conditions resulting from them. There is also no requirement for members to particpate in discussions. As long as you get some benefit from reading the messages, then your membership is worth it to us.

PRIVACY
This group is private, so your emails wonít be posted on any public web sites. The only time your email address is visible is when you send out a message to the entire group, and then it is only visible to group members. If this is still a concern, you can create an address that you use just for this group using a free service like Hotmail or Yahoo mail.

OTHER SERVICES
In addition to the email group, the following other services are available to group members:

TO JOIN
To join, please send an email to David McCorkle, list facilitator, by clicking here
or send an email to cranio-facilitator@braintrust.org with the following information:

  1. Your first and last name
  2. Your email address
  3. Your relationship to the patient
  4. The patientís name
  5. The patient's birth date (full date or month/year)
  6. The date of initial diagnosis (full date or month/year or year)
  7. Your location (at least state/province and country)
  8. Any other introductory information you wish
Privacy is taken very seriously in this group, and this information is kept confidential. The name and email address are needed for sending you group email. Dates are used to calculate ages for statistical purposes only. Information about you is not disclosed to other group members unless you chose to do so yourself. Once you are added, you will be sent instructions and guidelines for using the group.

If you have any questions or issues you wish to discuss prior to joining, please feel free to contact the list facilitator at the above address.

ABOUT CRANIOPHARYNGIOMAS
Craniopharyngiomas are very rare brain tumors estimated at around 300 new cases diagnosed in the U.S. per year - literally one in a million. Without a list like this, it would be extremely difficult for "cranio" patients to find each other. Although the tumor is considered benign, it occurs in the critical area of the pituitary gland, hypothalamus and optic chiasm, so patients can be left with hormonal deficiencies, vision problems, obesity and other problems, making this a potential life-long condition even in tumor free patients.

LINKS
These links are to help you in your search for information, and their inclusion here in no way represents either an endorsement or a testament to the accuracy of their contents.

About Craniopharyngiomas
TypeDescription
Medical Info eMedicine Journal - Craniopharnygioma article
Web Site Craniopharyngioma Information Site
Web Site Phoenix Rising Brain Tumor Awareness and Support
Web Site Craniopharyngioma Brain Tumor Web Site
Treatment options Gamma Knife
Treatment options Cyberknife
Personal Story Jon's Journey
Personal Story Lou Gramm - Lead Singer for Foreigner

About Pituitary Issues
TypeDescription
Support Group Panhypopituitarism online support group (primarily parents)
Support Group Pituitary hormone deficiency online support group (primarily adult patients)
Medical Info Addison's Disease (NIH)
Medical Info Addison's Disease (Mayo clinic)
Medical Info Emotional Aspects of Pituitary Disease
Medical Info Central Diabetes Insipidus
Medical Info Growth Hormone Deficiency in Children
Medical Info Growth Hormone Deficiency in Adults