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Community Based Genetic Literacy and Support Project

What is the Sheffield Genetic Literacy Project?

The project works with families and professionals to raise awareness of recessive genetic conditions in children. We work city wide with GP’s, Health Visitors, Midwives and other community groups.

We also run video workshops and ‘Train the Trainers’ sessions for staff and professionals. If you are interested to attend any of our training / workshop sessions then please get in touch.

What are Recessive Genetic Disorders?

We all have thousands of genes inside our cells, the codes that control our bodies. We have 2 copies of all our genes, one copy from our mother and one from our father, people from all communities carry several changed genes no matter where they are from or what their background is. Some genetic disorders only occur if a person has two copies of the same changed gene, one from their mother and one from their father. These are called recessive disorders, such as Thalassemia and cystic fibrosis.

People carry several hanged genes that could cause such a recessive disorder if their partner is also a carrier of a change in the same gene. But we don’t usually know this because the normal copy of the gene is sufficient to do the necessary work inside our body. These individuals are healthy ‘carriers’ of this changed gene.

When couples who are not related have a baby there is a lower chance of them both having  change in the same gene.  Therefore, usually even if one parent passes on a faulty gene the child will receive a normal gene from the other parent and be healthy.

When couples are related then both parents may carry the same changed gene and if so there is a 1 in 4 chance in every pregnancy that the child will receive two changed  genes one from each parent  and be born with a recessive genetic disorder. There is also a 2 in 4 chance that the baby will receive one copy of the changed gene from only one parent and will be a healthy carrier but could pass this gene onto their children. There is also a 1 in 4 chance that the child will not receive the changed gene at all. 

Who does genetics affect?

It affects everyone, regardless of whether you are related to your partner or not. However, the chance is increased if you are related.

If you are concerned about genetic disorders in your family speak to your doctor who can refer you to the Regional Genetic Service where you can talk to someone. You can also speak to the genetics outreach worker on the phone about how the service works and how it may be able to help you and your family. Please Contact Saima Ahmed at Firvale Community Hub.

Everything discussed is always treated confidentially and never shared with other family members without permission. 

An interpreter can be arranged if needed.

 

 

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