The adult information folder on cavernoma contains booklets on symptomatic, incidental and genetics of cavernoma (all of which were awarded the Crystal Mark by the Plain English Campaign), along with a personal information booklet which allows the patient to chart the condition’s progress and chronicle the impact on daily life.
A DVD is enclosed too allowing the interested person to view an introduction by Ian Stuart, founder member and co-ordinator, Mr Neil Kitchen, consultant neurosurgeon, National Hospital for Neurology and Neurosurgery, Queen Square, London and Professor Rustam Al-Shahi Salman, consultant neurologist, University of Edinburgh and NHS Lothian. CAUK members complete the introduction and then the viewer will be able to choose which member story they wish to follow. A range of members are included; members who have had neurosurgery, radiosurgery (gamma knife), or are following a “wait and see” approach. Brain cavernoma predominates but one featured member has had spinal surgery and a resection of the cavernoma.
Thanks to a grant from the Alice Ellen Cooper Dean Charitable Foundation, CAUK are able to post this free of charge to new members. However, current members and interested parties have to pay a nominal charge for the folder and postage and packing.