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September is the month worldwide to raise awareness of sickle cell disorder – known mainly as sickle cell disease. The condition is a genetically inherited condition that affects the red blood cells is prevalent mainly in individuals from the African diaspora community.

The condition was first described by American physician, Dr James Herrick in 1910 written in medical journal with the title “Peculiar elongated and sickle-shaped red blood corpuscles in the case of severe anemia”

 As one can imagine, living with the condition on a day-today basis can be and usually is described by those affected as debilitating as it affects mainly the muscles and joints and other parts of the body. Despite this, local community champion, Feyona continues to raise awareness of her lived experience and provide support to others throughout the borough and beyond.

We met when we worked together on the borough`s recent Hammersmith and Fulham Council project “Building Trust” that focused on inequality of health within the black African and Caribbean communities in the borough. The project hosted a series of Listening Events one of which covered the condition sickle cell. Some of the feedback from the event included the following:

• Concerns that the condition is not recognised as a disability when interacting with welfare benefits systems
• Lack of cultural awareness
• Not “being believed” – the burden to proof on the person living with sickle cell to be believed that one is in pain.

I have found Feyona to be a phenomenal advocate of sickle cell condition as she is involved in a range of forums and societies seeking to raise awareness and affect change at the local community, policy and parliamentary levels.

We recognise that more needs to be done to raise awareness of this condition across sectors in the borough.

The above was written with permission of Feyona.

For more information and if you wish to be involved, please contact Sharon by emailing sharon.tomlin@sobus.org.uk.

Please see below some useful links:

Sickle Cell Society: lived experiences, reports, campaigns – https://www.sicklecellsociety.org/

Hammersmith & Fulham:

• LBHF Directory: https://www.lbhf.gov.uk/living-independently/living-independently-service-directory/sickle-cell-society
• Imperial College Healthcare – Red Blood disorder clinics – https://www.imperial.nhs.uk/our-services/haematology/red-blood-cell-disorder/clinics
• Shepherds Bush Medical Centre: https://shepherdsbushmedicalcentre.co.uk/conditions/sickle-cell-disease/
• LBHF Directory – Family Hubs: https://www.lbhf.gov.uk/children-and-young-people/family-hub/health-and-wellbeing/medical-and-nursing-support/haemoglobinopathy-specialist-nurses

Work of Dr James Herrick: https://web.archive.org/web/20101119100223/http://archinte.ama-assn.org/cgi/content/summary/VI/5/517