Are you a caregiver for someone with scleroderma? If so you may need support for yourself. Michael Thorpe has been a caregiver for his wife Amanda since she was diagnosed with scleroderma in 2007 and knows firsthand how difficult and even isolating that it can be. Michael is keen to get in contact with other caregivers for people with scleroderma.
My name is Michael Thorpe and I have worked as a Counsellor and Consultant within the addiction treatment services for over thirty five years. Five years ago, on our 10th wedding anniversary my wife, Amanda, was diagnosed with diffuse cutaneous systemic sclerosis and told, in quick succession, that she would never return to work and needed immediate treatment. When leaving the consultation I considered how serious this diagnosis really was and how were we going to cope with it.
As part of our coping strategy we went on a search to find others who would understand this rare disease and what we were each experiencing as a person with the disease and as the care giver. It became clear that while the person with scleroderma was rightly pre-occupied with managing the disease itself, the symptoms, medications and so forth the care giver was muddling on alone without help because they were unaware that there was any.
On behalf of the Scleroderma Society Amanda established the local group for Essex, London & Kent and this group has flourished and I am pleased to say that this has also led to care givers meeting together as well. When the local group first started there was a distinct lack of care givers and it took a few years to cultivate attendance but now the care givers group is growing as well.
The care givers group and local group run simultaneously although people separate into groups automatically. In both my professional and volunteer work I have been involved in the development of care giver services. Listening to the needs of the care giver and getting alongside them is something I am passionate about because, I too, am a care giver. I believe itís a privilege to be involved with others who, like me, need someone who understands their challenges which are psychological, sexual, emotional and downright painful.
As well as being a care giver I acquired an Advanced Diploma in Person Centred Counselling and an honours degree in Addiction Management. I have also trained in Humanistic, Systemic and Psycho Dynamic counselling. If youíre interested in coming to a meeting or just want to contact me please do so.