Rapper Educates on the Hidden Pain of Sickle Cell Disease

Liam Davenport

April 06, 2022

MANCHESTER, United Kingdom — A London-based rapper, known for his gospel-inspired music, has now given a voice to patients with sickle cell disease. He is using his video to raise awareness and to educate healthcare professionals about living with the condition.

Alidor Gaspar, also known as A Star, composed the song Hidden Pain about his experience of living with sickle cell disease, and he created a video, posted on YouTube, that shows him in a hospital bed, writhing in pain.

One important aim of the video, he says, is to help educate healthcare professionals, some of whom have not come across this condition, he explained at a session during the annual meeting of the British Society for Haematology, held recently in Manchester, United Kingdom.

"It's kind of frustrating to feel like your safe space, when you're in front of doctors and nurses and paramedics who are supposed to know what it is and react with treatment, [and they] don't know what it is," Gaspar said.

He recalled an occasion in which he was experiencing a crisis and his wife called for an ambulance. The paramedics arrived and his wife asked them for "gas and air and morphine, and they were, like, no, we don't want to give that to him." She tried to explain that he has sickle cell disease, but the paramedics had not heard of the condition and were suspicious that the request for morphine was a sign of drug addiction.

Gaspar expressed his frustration over "constantly having to prove that you have something serious enough to need the treatment you are asking for."

At the meeting, Gaspar was talking on the stage with hematologist Stephen Hibbs, MD, from Barts Health NHS Trust, London, United Kingdom.

Gaspar explained that it took years before he eventually reached "a point where I understood that it's something that affects me and affects many other people, and I didn't want to hide it any more."

Sickle cell disease, which occurs primarily in people of Afro-Caribbean background, is a taboo subject in his community, Gaspar elaborated in an interview with Medscape Medical News.

The condition has been associated with a great deal of stigma, with young sufferers traditionally seen as "demonically possessed," he commented.

"So there was always a shameful aspect around it when it came to African families speaking about it, especially back in Africa."

But after his parents came to the UK, he was able to "do his research and understand that it's just genetics."

This knowledge, Gaspar said, "takes away the spiritual aspect" and allows people to "have the conversation about sickle cell with potential partners" and ask them to find out their genotype, which in turn helps to "break down the barriers and the stigma."

Gaspar emphasizes that there is much more work still to do.

In the video, he appeals to the Black community to make blood donations.

He said that something that "haunts" him is that currently, only 1% of Black people in the UK give blood, "so I really want the song to move my community to take a step forward and make that difference."

He has been in contact with NHS Blood and Transplant, which provides blood and transplantation service to the National Health Service. They "really liked" the song, Gaspar said, and helped him get access to a hospital ward in University College Hospital, London, for the video.

"I really wanted to make a video that made people uncomfortable when watching it," he said. It shows him hospitalized for pain and breathlessness and recalling having to use a Zimmer frame at the age of 25.

"This is a side of sickle cell that normally people don't know," he said.

Since releasing the song and the video, Gaspar says he has been contacted by many fellow patients. They have told him that he is now their "voice"; when they are asked how the condition affects them, "they can show someone the Hidden Pain video and say: this is how it feels."

Clinicians have also approached him, asking if they can show his video to illustrate to patients and their families how having the condition may affect their lives.

Preventable Deaths

At the meeting, Hibbs highlighted the 2021 report No One's Listening, which was issued by the Sickle Cell Society following an inquiry into avoidable deaths and failures of care for sickle cell patients.

The inquiry, published by an All-Party Parliamentary group, found "serious care failings" in acute services and evidence of attitudes underpinned by racism. There was evidence of substandard care for sickle cell patients who were admitted to general wards or to hospital accident and emergency departments, as well as low awareness of the condition among healthcare professionals.

The report noted that the care failings have led to patient deaths, some which could have been prevented, and that there have been many "near misses."

Many patients with sickle cell disease said they are "not being listened to" or are not being understood, especially during that vulnerable period when they are "in a crisis."

Gaspar said that the report, and also the deaths, really struck a chord with him and many in his community. "We felt like that was us.... We've all been in that same position where we've been misunderstood and not heard by nurses, doctors, or paramedics."

He emphasized the need for awareness of the condition and the need for timely treatment. Just 3 weeks ago, Gaspar attended the funeral of one of his friends who is in the Hidden Pain video, a fellow sickle cell disease patient, who died at 30 years of age.

Ignorance About the Condition "All Too Common"

The lack of awareness about sickle cell disease, even among healthcare professionals, is "all too common," says Subarna Chakravorty, MD, PhD, consultant pediatric hematologist, King's College Hospital, London.

Even in London, where there is a large Black community and the teaching hospitals have world-class expertise, patients with sickle cell disease are "still facing a lot of problems with knowledge" among healthcare professionals, she told Medscape Medical News.

"Often people are having to speak for their own condition, which is fine, except that sometimes they are not believed," she commented.

"On the one hand, you rely on the patient to provide information about their disease, and then when you receive it, you don't do anything about it. So [they're] between a rock and a hard place."

Why are sickle cell patients treated in this way?

For Chakravorty, there is "a lot to be said about racism and disparities" in treating patients "as morphine-seekers, opiate addicts, even in children.

"So we really need to improve the knowledge and perceptions among nonspecialist staff," she said, "and even among specialists."

Gaspar aims to help with this effort and hopes that his song and video will be useful to healthcare professionals. Sickle cell disease "needs to be spoken about," and more doctors and nurses need to "know what it is," he said.

Alidor Gaspar

He said it is a relief to encounter healthcare professionals who are knowledgeable about his condition. There have been times when he has been "having a crisis at home, calling the ambulance, and the paramedic comes and says: 'Mr Gaspar, you have sickle cell...we believe that you usually have gas and air and morphine, is that correct?'

"That gives me a sense of peace to know that I don't have to fight my case or convince someone I have sickle cell and I need to start treatment. They already know."

No relevant financial relationships have been disclosed.

British Society for Haematology 62nd Annual Scientific Meeting: Session 'Blood Stories: Lived Experiences of the Conditions You Treat (Part 1). Presented April 3, 2022.

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