Brenda's journey highlights the impact of stigma of sickle cell, the importance of compassionate care and why listening to patients matters.

Brenda was diagnosed with sickle cell disease by chance.

“I was in the right place at the right time. A few kids from my school in Ghana were offered genetic testing as part of a project to set up a sickle cell clinic. I was one of the lucky ones.”

Before then, Brenda had always struggled to keep up with the other kids. She was often tired, in pain, and felt weak. Adults would frequently tell her that she was lazy.

Brenda was diagnosed when she was 10 years old. This helped her identify her younger brother, who had similar symptoms as her, to have sickle cell and encouraged her parents to formally get him tested.

“It was a relief to have a diagnosis and an explanation for my constant tiredness and pains, but I also had to navigate heavy stigma. People didn’t want to associate with me, and I was labelled a ‘sickler’.”

Sickle cell disease creates unusually shaped red blood cells, which can cause anaemia and extreme pain episodes known as sickle cell crises. The condition is particularly common in people with an African or Caribbean background.

“Sickle cell is quite common in my community, so I was already aware of it, but no-one had joined the dots with my symptoms to realise that I had it. I had been conditioned to think of sickle cell as a negative, so I applied that stigma to myself for many years.”

After practising as a nurse, Brenda moved to the UK when she was 27 to complete her Masters education. When she registered with the GP, she told them that she had sickle cell, however, when she made an appointment to get a new prescription for her condition, she was denied it.

“They told me there was no proof that I had sickle cell, and without a new genetic test they wouldn’t prescribe me any medication.”

This marked the start of a very difficult period for Brenda. She was hospitalised on several occasions with a sickle cell crisis, but despite being in extreme pain, doctors still wouldn’t treat her condition without proof.

“It took me over six months to get a referral to a consultant. She arranged a genetic test, which obviously showed that I had sickle cell. Only then could I return to my medication.”

Brenda has used her personal experience and that of others to complete her PhD exploring sickle cell disease. She also volunteers with her local community to improve understanding and empathy around sickle cell disease, as well as encouraging people to undertake genetic testing for the disease.

To manage her condition, Brenda must live carefully, avoiding emotional, physical and cognitive stress. “It takes a lot of discipline and prioritisation to live with my condition, but I am determined to live with sickle cell rather than dwell on what I can’t do because of it.”

Brenda is passionate about improving the experience of others with sickle cell. With this in mind, she has two clear messages:

To all GPs: if you have a new patient with sickle cell, don’t assume they know how to access help in a sickle cell crisis. Help them to be prepared; don’t wait for the crisis to happen. As a GP, do you and your practice nurses know how to refer someone for genetic testing?

To A&E staff: More training is needed in A&E about sickle cell, but you don’t need to be an expert in my condition to recognise and accept someone’s pain. Usually, if someone with sickle cell is in A&E, they have exhausted all their self-management resources, and they are desperate for your help. Lead with empathy and compassion; they need your help.