Dating with Sickle Cell Remains a Taboo

Alidor Gaspar says he wanted to make sure Sickle Cell wouldn't continue in his family,

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.

“I did 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.”

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

“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 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.