by Dan Goodwill

The Toronto Pemphigus Support Group will be starting its fifth year in operation this fall. The group, which now meets three times a year, continues to provide support and information to Pemphigus patients within a hundred mile radius of Toronto, Ontario, Canada's largest city. The longevity of the group can probably be attributed to several factors.

First and foremost, the group tries to meet the needs of the people who attend the meetings. Most, if not all of the approximately two hours of each meeting are spent in listening to how each pemphigus patient (and spouse, parent, significant other) is coping with the disease, the treatments and the side effects. The group is small enough (12 to 20 people on average) such that everyone has a chance to speak.

Everyone who attends a meeting learns that they will have as little or as much time as they need to discuss how they are coping with the disease. They will find a group of willing listeners who are there to provide information, encouragement and advice. That is the essence of a support group.

Over the past four years, we have learned some things that may be helpful to other support groups.

1. It is important to enlist the support of Dermatologists in the area. To this end, the former Head of Dematology for the province of Ontario, signed a letter written by myself, which was sent to every dermatologist in the province. This created awareness of the formation and purpose of the group and encouraged referrals. I would also suggest that the head of the local support group in each area maintains contact with the leading dermatologists in the area.
   
   
2. Many people have learned about the existence of the group from the National Pemphigus Foundation website. In that website, there is a reference to myself and the Toronto Support Group. This has been very helpful.
   
   
3. While we have had guest speakers from time to time, we have found that people come to the meetings because they need a forum to speak and listen to other people who are going through the same process and who have empathy and understanding.
   
   
4. Our meeting room in a Community Center in the middle of Toronto has proved to be a convenient meeting place.
   
   
5. A weekday evening is preferred over a weekend afternoon as a meeting time. People prefer to spend their weekend time with their families and friends.
   
   
6. Initially, we began with a meeting every two months. This was found to be too much. Meeting three times a year is much preferred.
   
   
7. To help each other between meetings, patients are encouraged to exchange telephone numbers. People are encouraged to call other members of the group for advice or assistance on an ongoing basis.
   
   
8. New Pemphigus patients are strongly encouraged to bring their spouse or significant other to the meetings. These are the main support people in the life of the patient. They play a much more important role than the dermatologist or support group. It is very important for them to learn about the mood swings and weight gain being experienced by other Pemphigus patients. Their support is critical to a speedy recovery of the person suffering from this illness.
   
   
9. It is important to understand that the composition of the support group is constantly in flux. Newly diagnosed patients are referred to the group on an ongoing basis. As patients start to feel better, they may feel they no longer need to attend the meetings and drop out. One of the keys to our success to date has been the fact that several of the patients who are in remission, or close to remission, continue to attend the meetings to provide assistance to newly diagnosed patients. This is extemely helpful.

As a final coment, I would suggest that the group leader ask the attendees what they expect from their support group. No two groups are identical. There can be differences between cities, regions or countries. By meeting the specific needs of the local community, this will likely be the best means of ensuring a successful support group.