National Sickle Cell Awareness Month

This September marks National Sickle Cell Awareness Month, a time focused on highlighting the need for research and to be screened for a disease affecting many people within the Black British community today.

7 things you should know about Sickle Cell:

  1. It’s a blood disorder affecting the red blood cells, giving them a distinctive sickle shape, which can cause health problems including crises, risk of serious infection and anaemia.
  2. The disease predominantly affects people from African and Caribbean backgrounds.
  3. If you’re a ‘carrier’ of Sickle Cell, although you carry one of the genes causing the disease, you do not have the condition yourself. This is also known as ‘Sickle Cell Trait’.
  4. If both parents are carriers, there’s a 25% chance that a child will be born with the disease.
  5. Stem cell or bone marrow transplants are currently the only cures, but they’re not done very often because of the risks involved.
  6. Screening for Sickle Cell in England is offered as part of the newborn heel prick test.
  7. A blood test can be done at any time to find out if you are a carrier and are at risk of having a child with the disease.

We caught up with Odja and Denice, two young Black British women impacted by the disease, to get an insight into their experiences.

Living with Sickle Cell/Sickle Cell Trait is…

O: something I love to forget until I’m dating and I remember that I need to know if my partner has it too.

D: very exhausting both physically and mentally. I wake up in pain most days, so overcoming that is a daily battle between myself and my body – I usually win!

One thing people don’t know about it is…

O: how many people have the trait and may never know until they get checked, or have family that have the disease.

D: this is a life threatening disease. There is a [reduced] life expectancy and it can be very severe for some people.

A big misconception is that…

O: you can’t live a normal life or live past your teens, but that’s very false. Once you have understood your crisis triggers and pay close attention to your diet, you will live a great quality of life.

D: because we don’t look like there is anything wrong with us physically, we are not going through pain. There is a huge lack of knowledge within the NHS and it is up to us as a people, to demand more education on the disease.

It’s important to get screened because…

O :it really impacts your child’s life, your family and also yourself if you do end up conceiving with someone else who is a carrier.

D :when picking your future partner, it is important to know if you could be passing it onto your children!

For more information about Sickle Cell and how you can check if it affects you or your loved ones, visit: https://www.nhs.uk/conditions/sickle-cell-disease/