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The National Information Centre for Metabolic Diseases |
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Children and Young People's Services
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….. because metabolic disease can affect the whole family!! The Young Peoples Service is for all those young people whose lives have been affected by metabolic diseases. Just like parents we come into contact with Young People who are also in need of special attention, understanding and support what ever the issues…. Growing up for any young person can be very difficult in this day and age however when you are a young person and your life is or has been affected by a metabolic disease this can become even more problematic. Valuable time for these young people is spent in hospital, often then missing out on the opportunities other young people have to enjoy. Siblings can often also miss out on spending valuable time with their parents and miss out on other activities because often so much time is needed on their brother or sister who has a metabolic disease. As you can imagine then the sense of isolation experienced by young people whose lives have been affected by metabolic diseases is often very high. We recognize this and are here for them. Many young people have found this a beneficial and positive service to be part of, “like I always say 2 ppl from Climb I think its gr8 wot u do” “I would tell people to join because it can help you feel good to read about others in similar situations” “thanks for being there” There are a variety of activities that young people can be involved in: Magazine – Unique magazines specifically designed for and by young people. ‘Cool News’ (aged 13 and over) and ‘Cool Kids’ (for under 13’s) Both magazines contain wonderful competitions and magnificent prizes to be won. Penfriend Scheme - A linking service for young people, so they can share their experiences with other young people and build friendships, as we know the difficulties faced by young people who have a metabolic disease, or the yhave a brother or sister with a metabolic disease. Workshops and Activity Days –An important chance to meet other young people whose lives have been affected by these rare diseases and can ease the sense of isolation experienced. For further information then please do contact us. We would love to hear from you if you would like to be part of our service or know someone who would benefit from being involved!
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