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.
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.
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:
- Available treatments and experiences with outcomes
- Weight and appetite control
- Cortisol during times of stress
- Growth hormone in children and adults
- Hormone replacement in general
- Dental/bone loss issues
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.
This group is private, so your emails won’t 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.
In addition to the email group, the following other services are available to group members:
Member’s Only Web Site. This is a private and unpublicized web site restricted to members of this group. It contains a searchable archive of all group messages since April 2000 (currently over 14,000), as well member photos, member stories and assorted documents.
Liason Program. This program is designed to benefit those having surgery or other treatments that require a hospital stay. During this time, communicating with the group is often difficult due to time and technology. In order to facilitate this, a “liaison” from our group is assigned to the patient. This person can then check up on the patient via phone and in person if possible, and can provide a link to the group. This serves a dual purpose. First, if any questions or issues come up at the hospital, the liaison can present the information to the group and receive response that will get relayed to the patient. Second, group members will know how things are going with the treatment. Of course, this program is only initiated if the patient agrees.
To join, please send an email to David McCorkle, list facilitator, by clicking here
or send an email to firstname.lastname@example.org with the following information:
- Your first and last name
- Your email address
- Your relationship to the patient
- The patient’s name
- The patient’s birth date (full date or month/year)
- The date of initial diagnosis (full date or month/year or year)
- Your location (at least state/province and country)
- 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.
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.
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.
|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|
|Personal Story||Jon’s Journey|
|Personal Story||Lou Gramm – Lead Singer for Foreigner|
About Pituitary Issues
|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|