I was in a shell the first 40 years of my life. I went to a psoriasis event and I asked the question, what can I do to help? I was told at that time that I had a voice that I needed to used. So I pondered on it for a while and said, “Why you don’t start a support group?” I didn’t know where to start or what to do. I ran an ad in one of our free newspapers that simply said, psoriasis support group meeting. This was the start of a 10 year adventure. I was scared to death, didn’t haven’t a clue what to do or say. I didn’t even have a bottle of water to offer. I was not prepared.
It is a known fact that over 7.5 million people have psoriasis. The one thing that I have learned in the past years is that there are people walking around with this disease lost as to what to do.
I have always known I had psoriasis, but there are people who don’t. My cause in this life is to help those who can’t help themselves and educate others. When you know better, you do better. Support group meetings are confidential. Make your ground rules very clear from the beginning. What is shared here stays here. Find out if there is a need for a support group.
You need to decide how often your group will meet. We would meet once a month. I know of some support groups that meet weekly. Make sure you set up an emergency plan if you can’t attend, but want the meeting to go on. You want to have a person that can be a contact person in between meetings.
Find a place to meet. I would meet at the library and community centers. Try to find free places with chairs and plenty of space. I would also provide light snacks and refreshments. On several occasions, I have had speakers to attend. This usually brings in a larger crowd.
Through my support group, I have been able to work with doctors who give samples to patients in need and see them. We have so many people who don’t have insurance in this country. I help find organizations that will medications and copays.
Keep your support group members information up to date. Have everyone sign a contact sheet at each meeting. Send out notification about the meeting in advance, and then a follow-up letter or email.
You need to have a well-balanced, structured support group. You want to provide support for the people that attend. I always let people know that this is a safe place to not be judge.
Over the years I have been an active advocate for psoriasis and psoriatic arthritis, speaking up and out about this disease.