The UK Story of Sickle Cell and Thalassaemia.

This month Sasha and Mavis enjoyed hearing about the story of Sickle Cell and Thalassaemia. The event was introduced by Prof Dame Elizabeth Anionwu the first sickle cell specialist nurse in the UK. It was an enlightening afternoon spent reflecting on the experience of the Sickle Cell and Thalassaemia community and what that could teach us all about improving inclusion in genetics.

Introduction with Prof Dame Elizabeth Anionwu to the Genetics Engage event ‘The UK Story of Sickle Cell and Thalassaemia’
Interview with Prof Kark Atkin about his 20 year experience of research and service development for Sickle Cell and Thalassaemia.
The UK Story of Sickle Cell and Thalassaemia : What can in teach us about inclusion in genetics? Sasha and Mavis talk to friends from the Sickle Cell Society, The UK Thalassaemia Society, The Sound of Sickle and Those involved in the care of Sickle Cell and Thalassaemia Society.

The Sickle Cell Society


The Sound of Sickle

Our Journey, Our Story: History and Memory of Sickle Cell Anaemia in Britain 1950 – 2020 is available online at:



If there is a history of cancer in your family how often do you get screened ?

Screening for the cancers common in the general population in the UK is offered through national screening programmes. This is usually for breast cancer, bowel cancer, cervical cancer and prostate cancer. They are all done at different frequencies and ages depending on your family history and sometimes ethnicity.

It is important that you attend screening when recommended and do self checks.

If particular cancers are more common in your family or you have a higher personal risk your GP, family history nurse or genetic counsellor can work out what screening you should be having and how often. This may be as frequent as every year.



If your parents suffered from a hereditary cancer what are the chances that you will develop it or pass it on?

All hereditary cancers are different. The risks of passing on a faulty gene that increases the risk of a cancer can be as high as 1 in 2 ( 50%) but it can be lower too.

The risk of cancer varies. Talking to a genetic counsellor will help you to know: if the cancer in your family is hereditary, if there is a faulty gene that can be identified and what your chances of developing cancer may be.

Sometimes the chance of developing a hereditary cancer is as high as 80 % sometimes it is as low as 1%. This chance can be affected by the specific gene, your age, your diet, whether you are a man or a woman amongst other factors.


What are the most common hereditary cancers?

Breast cancer and bowel cancer are the most common hereditary cancers seen here in the UK. In the general population about 1 in 10 women get breast cancer and 1 in 20 individuals get bowel cancer.

In families where this is hereditary the risk of getting a particular cancer can be as high as 8 out of 10. There are lots of genetic conditions that make it more likely to get cancer. Each condition is uncommon and caused by faults in different genes. Each faulty gene will only cause certain types of cancer.