Woodbridge: Sickle cell disorder warrior, 78, to be honoured

Dela Lloyd, now 78, travelled to the UK to study nursing when she was just 19. 

As a child in Ghana, she had always been plagued by intense pains which continued into adulthood and left doctors mystified.  

Dela Lloyd (second right), pictured with Elaine Tappin (left) and volunteer Pearl Groden (second left), and her husband, John. John has been a huge support to his wife over the years. Image: Elaine Tappin (Image: Elaine Tappin)

Artist Neequaye Dreph at the unveiling of his mural at Stockwell Hall of Fame in London. The mural honours members of the Black community in England who donate blood regularly, which helps those living with sickle cell, and to encourage others to do the same. Image: PA (Image: PA)

After her midwifery course came to an end, Dela came to Woodbridge to study psychiatric nursing.  

The pain became unbearable, and Dela’s GP in Woodbridge referred her to Addenbrookes Hospital. It was here that Dela was finally diagnosed with Sickle Cell disorder in 1970, at the age of 25. 

At this time, the life expectancy for someone with Sickle Cell disorder was just 35 to 40 years.

What is sickle cell disorder? 

The NHS website states that sickle cell disorder is the name for a group of inherited health conditions that affect the red blood cells. The most serious type is called sickle cell anaemia. 

People with sickle cell disorder produce sickle-shaped shaped red blood cells that can cause problems, because they do not live as long as healthy blood cells and can block blood vessels. 

Sickle cell disorder is a serious and lifelong health condition, although treatment can help manage many of the symptoms. 

It predominantly affects people of African or Caribbean heritage. 

At this time, very few clinicians in Suffolk understood Sickle Cell disorder, or had even heard of it.  

“Our illness wasn’t well-known at all,” explained Elaine Tappin, 58, from Ipswich.

Elaine has Sickle Cell disorder herself, and is the co-ordinator of the Sickle Cell Suffolk.  

The group works to promote better understanding of Sickle Cell disorder, and to raise awareness of the ongoing need for Black blood donors to come forward. 

Like Dela, Elaine suffered intense pain which has continued throughout her life. Although Elaine was diagnosed as a child, by doctors who recognised her symptoms from time spent in Africa, her mother was given no guidance on how to help Elaine. 

Elaine Tappin, left, with brother Nigel and daughter Tamar. Both of them regularly donate blood, and Nigel has done so more than 40 times. Image: Elaine Tappin (Image: Elaine Tappin)

Blood donor Louise giving blood. In October 2021, Sickle Cell Suffolk organised its first group blood donation session, with 12 new donors registered. Image: Elaine Tappin (Image: Elaine Tappin)

Sickle Cell Suffolk tries to raise as much awareness as possible of the need for black blood donors to come forward. Image: Elaine Tappin (Image: Elaine Tappin)

“Consultants who know about our condition say it’s one of the worst pains imaginable,” explained Elaine. “I’ve had a child, and this pain is ten times worse than labour.” 

Now, Elaine knows that activities such as swimming in cold water and sports can put the body in ‘crisis’. As a child who loved cross-country running, however, she would be left in agony. 

During the 1970s, Dela heard that there were meetings happening in London amongst people with Sickle Cell disorder and their families.

She and her husband, John, began attending and got to know others with the disorder.

Here, Dela met the now-Dame Elizabeth Anionwu, who became the country’s first sickle cell and thalassemia nurse specialist in 1979. Dame Elizabeth received a Lifetime Achievement Award, presented by Janet Jackson, recognising her “passion for nursing and dedication to reducing health inequalities”. 

Dela got to know Dame Elizabeth Anionwu through her activism in London. Image: PA (Image: PA)

Street artist Neequaye Dreph at the unveiling of his mural at Stockwell Hall of Fame in London. The mural honours members of the Black community in England who donate blood regularly, which helps those living with sickle cell, and to encourage others to do the same. Image: PA (Image: PA)

Dela continued to campaign and raise awareness of Sickle Cell disorder, both in London and in Suffolk, when the Sickle Cell Suffolk was founded by Anetta Bradshaw some years ago. 

On Saturday afternoon at the Castle Hill Community Centre in Ipswich the group will celebrate Dela’s achievements as a Sickle Cell warrior in a ‘This is Your Life’ presentation.

The day will also include talks by guest speakers, including Dr Martin Besser of Addenbrookes Hospital and John James OBE, the chief executive of the Sickle Cell Society. 

However, Elaine says there is still some way to go. 

It has long been thought that racism has prevented research and better understanding of the disorder, which predominantly affects black people. 

Elaine said she has often encountered hospital staff who do not understand her condition, and sometimes question the treatment she needs. 

Indeed, for many years she and others in Suffolk with Sickle Cell disorder had to travel to Middlesex every time they needed a check-up, because this was the nearest specialist hospital.  

The life expectancy of someone with Sickle Cell disorder also remains low. At 67, this is 14 years younger than the average person in the UK. 

The fight to have Sickle Cell understood and respected as much as other genetic disorders, Elaine said, continues. 

“It’s about equality,” she said. “I wouldn’t want to be treated better than someone with cystic fibrosis or cancer, but I do want to be treated equally.”