In 2011, The Sylvia Adams Charitable Trust contributed funding towards Alström Syndrome UK’s (ASUK) Asian Mentoring Scheme (AMS). Alström Syndrome (AS) is a rare autosomal recessive condition causing childhood blindness, hearing loss, heart failure, kidney failure, diabetes type 2 and many associated problems.
Statistics have shown that there is an increased risk of a child being born with a genetic condition within families where consanguineous marriages are customary. The Asian Mentoring Scheme was established to address this issue within families of South Asian origin who were affected by AS, and despite the fact that ASUK were aware of how rare this condition was, it was felt that there may be families within the UK who had not received a diagnosis.
It was also felt that some families appeared reluctant to contact support groups and engage with professionals as they were often very well supported within their own families and communities. In addition to this, families often turn to seek support from religious leaders, leading to spiritual support from their practicing religion. However, this prevented children and adults having access to specialist health care, advice and support.
The purpose of this project was to identify families, provide access to medical care at a specialised multi-disciplinary clinic in Birmingham, work with the whole family to ensure everyone was aware of the risks of having further children with the condition so that they were able to make informed choices about future pregnancies and to support families to learn more about AS to enable them to effectively manage the condition.
This project enabled ASUK to work within Asian communities to develop a greater understanding of their culture and beliefs, the barriers and challenges they face and to raise awareness of Alström Syndrome. Significant changes were made to the services the charity provided and it now offers a diverse and inclusive service to all families involved. Information was provided in an accessible format, ensuring that families received the information they needed about their condition and the reproductive options available to them. As consanguineous marriages are customary amongst many people of South Asian origin, this information can benefit entire families. The project was a great success and ASUK initially received an increase in referrals from families of South Asian descent due to their awareness raising campaign. Families then became more aware of genetics and made informed choices about the options available to them and other extended family members.
The number of families diagnosed with AS increased significantly throughout the duration of the AMS and The Sylvia Adam’s Charitable Trust has now committed to invest additional funds to widen the benefits of this project to other organisations. Kerry Leeson-Beevers who was involved in the design of the AMS and managed the project, has been seconded part time from ASUK to lead Breaking down Barriers. Kerry has worked for ASUK for ten years and is experienced in managing a variety of different projects and in collaborating with people in the voluntary sector and within health, education and social care. Most importantly, Kerry has personal experience of living with a rare genetic condition as her son is diagnosed with Alström Syndrome.