WHEN ALIDOR Gaspar was diagnosed with sickle cell disease as a young child, he couldn’t have predicted how the hereditary condition would go on to shape his path as an adult.

Despite his mum having sickle cell disease, and his dad carrying the sickle cell trait, the 33-year-old told The Voice that he never really understood the disease he’s lived with everyday until an encounter in his early twenties.

“When I was 21 I was actually in a relationship with someone who knew that I had sickle cell,” he recalls, “and she told me we couldn’t continue [the relationship] because her mum told her that she shouldn’t date anyone with sickle cell.

It definitely is taboo. People ask when they should have the conversation about sickle cell and I always say on the first date.

Alidor Gaspar

“I didn’t understand what it meant, but I knew then that it was something serious.”

That moment stayed with Alidor and years later it prompted him to search for more understanding about the condition that he admits only went as far as being told that he “couldn’t get a cold and had to stay hydrated”.

“I started to do research on what sickle cell is, how it affects you in regards to genotypes,” he says. 

“When you have AA or AS that is the [sickle cell] trait, but then you have full blown [sickle cell] which is SS. 

“I started to understand that if I want a child to have less of a chance of having Sickle Cell, I should definitely make sure I marry someone that has AA and doesn’t have any form of sickle cell whatsoever.”

According to the Sickle Cell Society, around 15,000 people are living with sickle cell disease in the UK with almost 300 babies being born with the hereditary disease each year. 

The condition can affect anyone, but disproportionately impacts those from African and Caribbean backgrounds and like in the tragic deaths of Tyrone Aiery and Evan Nathan Smith who rang 999 from his hospital while having a crisis.

This year, the No One’s Listening report, published by the All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia and the Sickle Cell Society, goes on to detail the racial inequalities and ignorance around the condition that black people face with the health service.

Genotype

However, Alidor believes that as well as combatting the failings within the NHS to better treat sickle cell patients, more needs to be done in the black community to tackle the disease. 

“It definitely is taboo. People ask when they should have the conversation about sickle cell and I always say on the first date,” he says.

“If you’re someone who is a full blown carrier, that is something that is a major thing in your life. 

“I don’t see why the conversation could not come up. I’d rather if I was still dating, just give that person what is straight away so they have a choice whether they want to continue.

“My now wife, she asked her mum what her genotype was when I told her I had sickle cell, but I still had to ask her to get another test.”

He added: “I take it very seriously because I know what I’ve been through as a young person and any sickle cell patient will tell you the kind of things that have been through, how it affected their parents.

“Especially with my mom having sickle cell and I always tell the story of me going to visit my mom in her ward while we both had a crisis. 

“I just wanted to make sure that sickle cell wasn’t something that would continue in my family and be something that stops, hopefully within my generation.”

Screening

Iyamide Thomas, an NHS Engagement Lead at the Sickle Cell Society, told The Voice that research in sickle cell carriers being tested while dating and encouraging conversations around the issue is a work in progress.

Ms. Thomas currently leads a project by the Sickle Cell and UK Thalassemia Society that encourages pregnant mothers to be screened before giving birth.

“The screening programme is officially for antenatal and newborns and is to ensure that people know about sickle cell and to raise awareness about sickle cell,” she says, “and to take away from the myths people have about finding out about their genotype. 

“It’s not a preconception screening, but that’s not to say that people can’t get tests for their genotypes beforehand.

She adds: “With screening, the woman gets pregnant and she’s tested, and if she’s found to carry the gene, they then call the father to be to do the testing.

“Prior to that, it’s very important to also know that men knew about sickle cell, which is why with the outreach project we went into the barbershops, mosques, churches, you name it. 

“People can also go to their GPs and NHS Centre for testing, but we don’t have enough research or data collection to say how many are doing this.

“Sickle cell continues to have a lot of stigma – religious and cultural – so we try to get people to talk about it in everything we do.”

Advocate

Alidor marked his five year wedding anniversary with his wife in August, and has since welcomed their young daughter into their lives who has the sickle trait.

The music artist and youth advocate, who previously released a song about living with sickle cell, says his priority has been his work in encouraging these difficult conversations and dispelling “ignorance in 2021 for us [black people] to say they don’t know their genotype”.

“I think it [genotype testing] has to be a necessity within the black community,” says Alidor. 

“The other day, I had a phone call from my friend and he was upset because he found out that his son had sickle cell and for me it made me question whether I was doing a good enough job.”

“What I want is for the voices of sickle cell patients to be heard within the NHS and how we are being treated by doctors and nurses, when it comes to medication, A&E and the response to our pain. If it was a sickness that affected mostly white people, would the outcome be different? For me, that’s a yes. 

“More conversations with friends and family need to be and about sickle cell and encouraging black people to give blood, because we make up only 1% of donors.”

He adds: “I have a one-year-old daughter and when she grows up I’ll have to explain what sickle cell is and encourage her to find a future partner who is AA and for her to take that very seriously.

“Because this is what dad had to go through in life and I don’t want that to continue on through the generations.”