Our support group started out as an e-mail support group about five years ago for the support of patients and their family members. Our focus has always been on helping the person with Pseudotumor Cerebri deal with the disease and to help family members understand what their loved ones are going through. I recently set the support group up on a list server for the convenience of the members. We have continued to see the support group grow and new members are added to the list almost daily. We currently have 55 subscribers. Two physicians are included in that number. I will be actively recruiting physicians as members. We are attempting to educate sufferers and physicians alike. Our members often have very constructive information to help the newly diagnosed person as well as the long-time sufferer cope. This web page is an extension of our e-mail group and I hope to add other services soon. I welcome any suggestions and information about services that are available. In speaking with physicians who are doing research, the need for a foundation was brought to our attention. If you are interested in being on a board of directors for a foundation, please e-mail me by clicking on the link to my e-mail which is below.
There are currently two ways to join the support group. You may send me a message by clicking on my e-mail link, below. You also may use the link below to subscribe directly from this page. I strive to make this support group one where you are loved and treated with respect at all times. I want this to truly be a place where you loved and treated gently. Sometimes there are differences of opinion among our members. This is good and I try not to allow these differences to come between us, but try to help all to understand that we were created with these differences and they should not cause division but are truly reasons to celebrate. Diversity in our disease makes each of us respond differently to treatments and diversity in our personal lives make us unique individuals. You are "UNIQUELY YOU" and not like any other. I love having people of every color and creed in out group.
I hope you will visit here often and send me suggestions for improving "OUR" page. This site is intended to be a friendly site. It is intended to be a haven in the midst of the very impersonal World Wide Web and a refuge from the cruel world. I hope you will feel at home here and want to tell others about it. I will be featuring PTC patients on this site. I will use their stories and pictures (with their permission, of course) I have been unable to get any of my PTC Profile stories because the people I have asked, have been too ill. I do have some other stories in the works. Don't give up on coming back here for the new stuff. My computer was down for three weeks and that delayed things. But I am back on the job and looking forward to meeting YOU!
There has been another e-mail support group started recently. E-mail me for details if you are interested in joining more than one support group. Each group has different guidelines and will appeal to different personalities. The group I facilitate will have the same tone as my web page and the other will reflect the personality of that list owner.
Be sure to sign my guest book and read what others have had to say.
Sign My Guestbook View My Guestbook
This is where you come to join the group.
This is something that I thought was a little fun. Try it to see for yourself