Hidden Pain
LDA Research spoke to Sickle Cell Disease patient leader Alidor Gaspar about the quality of care he has received in a society that doesn’t see invisible pain, and the urgent need for blood donations, in support of World Sickle Cell Day
Sickle Cell Thalassemia affects millions of people across the world and is common in people of African or Caribbean family background. In the UK, 15,000 people are affected by sickle cell and more than 300 babies are born with the condition each year.
It is a genetic blood disorder that causes misshapen red blood cells, which can get caught in the blood vessels, blocking the blood flow. This can lead to extreme pain (crisis) and life-threatening infections.
People with Sickle Cell Disease also have increased risk of serious health issues such as acute chest syndrome, stroke, blindness and brain damage and can experience damage to major organs like the liver, kidney, lungs, heart and spleen. Complications of the disorder can be fatal. The only cure is a bone marrow transplant, but suitable donors are limited and difficult to find.
The Sickle Cell Society UK is the only national charity in the UK which supports and represents people affected by the disease. They campaigned successfully, in collaboration with health care professionals to secure a new NHS policy for funding adult bone marrow and cell transplants. Before this the NHS would only fund bone marrow and stem cell transplants for children with a sibling donor.
‘Many people with sickle cell need blood transfusions. These help to reduce and prevent a severe crisis, but to get the best treatment, patients need blood from a donor of the same ethnicity. Many sickle cell patients have the Ro blood subtype and currently, there is a gap between the amount of Ro blood we collect and the demand for Ro blood from hospitals,’ wrote The Donar.
‘The Ro subtype is 10 times more common in people of African and Caribbean descent, who account for the vast majority of sickle cell cases. However, only around 2% of donors have this rare subtype, so meeting demand can be difficult. That’s why the blood of black donors plays such a vital role in helping to save and improve the lives of those living with sickle cell today.’
It is a myth that you can’t give blood if you have the sickle cell trait. Those with the sickle cell trait carry the condition (and can pass it on to their children) but do not suffer from sickle cell disease itself.
Alidor Gaspar, is a Sickle Cell awareness and blood donation campaigner based in London. He has lived with the disease since he was a child, and said he felt like an outcast at school, where there was no understanding of the condition. Initially he had to travel to Europe for treatment because it wasn’t available in the UK. As a result of the quality of care he has received in a society that doesn’t see invisible pain, he is now passionate about advocating for his and future generations.
He first became ill with a sickle cell crisis when he was five years old while visiting family in Belgium. Alidor had to be carried to the hospital where he was prescribed Hydroxycarbamide. His mother also has sickle cell disease and his father is a carrier. He was the only child at primary school with the condition, and felt it set him apart from the other children. He needed to carry a water bottle with him constantly to stay hydrated, wore a hat, scarf and gloves to keep warm, and couldn’t play too hard. He questioned why he couldn’t be like the other kids?
During secondary school he needed regular time off to return to Belgium every three months for treatment, as the research into the disease was more advanced in Europe, and hadn’t been introduced by the NHS yet.
He was advised not to speak about his health, as the condition was considered taboo. Shame was attached to it being a hereditary disease. Some African countries still see it in a spiritual sense that the sufferer is possessed by a demonic spirit.
It wasn’t until he was in his mid twenties that he began to have any understanding of his condition, thanks to social media and Instagram, where he was relieved to meet a whole community of people with the same disease. He said that while doctors treated his symptoms, nobody explained to him why he was suffering the way he was, and so he had to do his own research.
Alidor learned to avoid triggers like stress, extreme weather, high altitude, over exhaustion and dehydration. He would get warnings of a crisis coming on, with pain starting in a leg or arm and then it would work around the body, or happen everywhere all at once.
He takes penicillin to fight off infection, and folic acid to keep his iron level up, to help combat fatigue. And strong painkillers including MST containing morphine.
When Alidor was older and wanting to start a family, he had to stop taking Hydroxycarbamide, as it is one of a group of chemotherapy drugs that can affect fertility. During this time, he didn’t take any other medication and suffered crisis after crisis, until he began the exchange transfusion programme. Happily, he now shares two daughters with his wife.
Not everyone can successfully have a transfusion because some patients can reject other people’s blood. And there have been times when he went for a transfusion and there wasn’t always enough blood. He usually has 12 units/bags, but sometimes only got 10. An amber alert went out in 2020-21 when they desperately needed blood around Covid time.
He described how the people who raise awareness for sickle cell disease, usually have the disease themselves, and have to be their own advocates. ‘It’s not like cancer,’ he said. ‘The problem is it’s a pain you don’t see. Some people have had to convince paramedics about their pain, and they can often get turned away from health care and labelled as drug seekers.’
Alidor spoke of Evan Nathan Smith, aged 21, a victim of neglect, who lost his life because he couldn’t get the right treatment for the disease in 2019.
The coroner, Dr Andrew Walker, said the cause of Evan’s death was the delay in treating him with ‘a timely exchange infusion’ and added that this was made more difficult ‘by a lack of understanding of sickle cell disease in the medical and nursing staff looking after Mr Smith’.
Guardian reporter Tobi Thomas wrote at the time, ‘This was despite the hospital where Smith was treated, North Middlesex hospital in Edmonton, north London, serving an area with a large African-Caribbean community.’
Alidor said that now he needs to speak about sickle cell disease to raise awareness. He goes into schools to educate children and teachers; corporate organisations; places of worship and is planning to go into prisons encouraging people to donate blood. ‘If it wasn’t for the generosity of people donating their blood we wouldn’t get the treatment we need.’
He is also a musician and has produced a rap song Hidden Pain about sickle cell released in March 2019. He said, ‘All the people in this music video have it. Some have since lost their lives.’ This story was picked up many news outlets including the BBC, Channel 5 and Sky, and he said that he felt relieved that someone was finally listening. We had found our voice. Alidor went on to create his charity organisation Hidden Pain Society last year where he mentors 13-16 year olds from diverse backgrounds.
In 2022 he was invited to the Annual Scientific Meeting of the British Society for Haematology (BSH) in Manchester, the largest annual haematology event in the UK, to learn about and discuss the latest updates in haematology, and where he performed his song.
He will be a voice for everyone with sickle cell disease on World Sickle Cell Awareness Day June 19 and during September which is sickle cell disease awareness month. ‘The NHS sometimes join me at these events to do finger prick tests to find out people’s blood types. Ro is the main blood type needed to help a person with sickle cell, but all blood helps. A blood donation from one person can save up to three lives. Every donation makes a difference.
‘My ambition is to partner with the NHS to host a video taking people through the whole process of donating blood – where it goes, how it is stored, and who it’s given to and the difference it can make to people living with sickle cell disease.’
As we also commemorate the Windrush anniversary this month, John James OBE, Chief Executive of the Sickle Cell Society UK said, ‘there is space for remembrance, but also for remedy: by working towards a better quality of life for people who left their home and everything they knew, to support the life we live today.
‘We can honour the legacy of the Windrush generation, ensuring that their contributions are celebrated, and the needs of those in that community who are affected by Sickle Cell Disease are acknowledged and met.
‘The Society was set up at the end of the ‘Windrush generation’, in 1979, and was formed by a group of patients, parents and health professionals who were all concerned about the lack of understanding and the inadequacy of treatment for people living with Sickle Cell Disorders.
‘Our work through the years has supported the Windrush generation to navigate the challenges presented by the condition and campaign for improvements. Today our work also supports the descendants of the Windrush generation, who are living with the condition or carry the trait.’
If you would like to donate blood please go to https://www.blood.co.uk/
sicklecellsociety.org
A Star - Hidden Pain https://youtu.be/gPaX0kXj_jQ?si=6ORJC-luHDrTPagP
