About the group
The GHNW Support Group is to support the members of the Haemochromatosis Society and other patients living in the North West of England.
We do this by providing a link to the Society; an opportunity to meet regularly; offering a listening and understanding ear, a platform for members to talk about their fears, discuss treatment and diet; to ask each other questions that we forgot to ask at a clinic appointment; to suggest and receive ideas on how to cope on a “bad day”. The gift of our time is the most precious thing we have to give.
The support group offers help and encouragement because after diagnosis, it is quite common to feel alone. Haemochromatosis is not well known generally, but being aware that there is someone or somewhere those effected can go to talk, really helps.
Many members travel a fair distance to attend meetings, it gives people something to look forward to, especially when they know that the other people attending understand the condition. At the meetings, nobody makes judgments, we are all on a par, members have remarked that the meetings and unison felt, likened the group to being part of a family. We all respect the confidentiality of the individual members of the group.
The aims of the Genetic Haemochromatosis North West Support Group are to:
- Support and care for members living in the North West region of England.
- Provide a link to the Society.
- Maintain links with health professionals.
- Encourage mutual support and friendship.
- Share information and experiences in a confidential atmosphere.
- Raise awareness of haemochromatosis.
- Help those effected by haemochromatosis to move forward and build confidence.
- Develop links with hospitals treating patients with haemochromatosis
- Distribute leaflets that contain a list of phone numbers for 1-to-1 support
- Establish a buddy system.
- Diminish feelings of isolation.
The aims of The Haemochromatosis Society, the national charity, are:
- To support people with GH by providing help with their problems and ensuring that their relatives are tested in due time. The quarterly newsletter provides news and views from members in the UK and around the world. Opportunities to meet other members living nearby are arranged if they wish.
- To promote AWARENESS among the health professions, patients and their families, the general public and policy makers so that the condition may be diagnosed and treated in time. There is also a need to overcome the misconceptions that GH is rare, that only middle-aged men are at risk, and that women are seldom affected until menopause.
- To encourage and support RESEARCH, and provide resource material for the allied medical professions. The Society keeps up to date on the latest studies.