Support Group Meetings
Slowly we are branching out across Canada and currently have Support Groups located in two large metropolitan areas: the Greater Vancouver Area (GVA), and, the Greater Toronto Area (GTA). Patients suffering with benign essential blepharospasm, cranial dystonia (Meige Syndrome) and hemifacial spasm meet at a minimum of twice yearly. However, there are those who are situated across this great country of ours, who cannot avail themselves of these meetings. You are going to ask "How do I get to one of these meetings?". There are two ways. You can ask your attending physician (most of them know about the Foundation) as to whom you can contact about the meetings or you can contact us directly.
Share your Experiences
If you cannot attend at one of the aforementioned centres you may still contact us, and, if we feel that we have someone close, we will contact them and see if they are willing to pass you their name, address and telephone number so that you may contact them and share your experiences. Essentially, we are encouraging you to form your own support group. Support Groups do not have to be large numbers or formal. At times we talk to patients who expresses a desire to speak to others afflicted with these disorders. It can be over a cup of coffee/tea or whatever, or, even over the telephone. It doesn't need to be during the day. Whenever and wherever it is convenient for each other.
If you do plan to go ahead with this programme, or, if you have already started one, please let us know. Perhaps we may be of some assistance and/or may be able to add contacts to your group.
If you suffer with one or more of these disorders and cannot, for whatever reason, attend any meeting whatsoever please send us your name and address and we will add you to our Newsletter mailing list. Interested members of the Medical Profession are also welcome at the meetings and/or to receive our newsletter.
All Ages Welcome
Despite the fact that most of the current literature on Benign Essential Blepharospasm (BEB) states that you are on in years when this begins, it appears that the median age is dropping. A growing number of our members are not middle-aged. For example, coping is very difficult for young housewives and/or working mothers with growing children. These people need a sounding board, someone who will listen. This is where those who have had the disability for some time come in. They can offer encouragement to this age group: they can function as mentors.
See you at the meeting.