Purpose of the Group
Listening - the primary purpose of our group is to listen to how the sufferers and/or carers are coping with these conditions. The Group find this very helpful. The most common comment we hear at the group is, 'Nobody told me that'. If there is time we then discuss a topic related to our conditions, chosen by the members of the group.
Providing Information - what most members of the group wanted was information about the conditions. There is very little known about these conditions that helps the sufferer. There is no known cause and no known cure. Some research has established some causes but there is no definitive group of causes.
We have found arc (the Arthritis Research Campaign) and Arthritis Care extremely helpful in providing information for our group. The British Society of Rheumatology was also helpful in putting me in touch with Professor Baskhar Dasgupta and his team who are doing research at Southend Hospital. Arc put us in touch with PMR Support East Anglia.
We are now affiliated to PMRGCAuk and through the networks share information so that we are kept as up-to-date as possible.
Keeping Hope Alive - we do this by encouraging each other and learning how others cope with the very varied symptoms.