People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells and can block blood vessels. The inherited condition is more common in people with African, Asian and Caribbean backgrounds.
Sanah Shaikh, 33, of Old Trafford, Manchester, is one of the first to try new medication Crizanlizumab, now available to around 5,000 UK sickle cell patients.
Crizanlizumab, only approved for the NHS in November 2021, is the first sickle cell treatment in over two decades.
It is delivered by a transfusion drip and binds to a protein in the blood cells to prevent the restriction of blood and oxygen supply.
Marketing and communications freelance Sanah, a patient at Manchester Royal Infirmary (MRI), told of how sickle cell pain periods known as crises left her in despair before starting taking the new medication.
Sanah said: “When I have a crisis, it feels as if my body is on fire – I’ve had a crisis in my head, back, arms and legs – it’s truly debilitating.
“Other times it feels as though someone’s got a hammer and hammering it into you – they’re smashing it into your body.
“Or it feels as though bricks are being thrown onto you. It’s pulsating and at times it feels as though you’d rather it all ended because you can’t endure the pain.”
A crisis will often require hospital admission so that patients can be given morphine to control the pain and other treatment to prevent potentially fatal organ failure.
Sanah added: “Once I heard about Crizanlizumab being approved for NHS use, I spoke to my Haematology Consultant and requested to be included in the first round of potential patients taking it at MRI.
“I would do anything to increase my chances of being cured or improving my health and illness.
“I was fortunate enough to be suitable for the drug. Since starting the treatment, I feel a lot safer and braver.
“I don’t feel as fearful about having a hospital admission if I push myself a little more, whether that be with work, or working out.
“The fact that I’ve not been admitted into hospital during 2022 and have managed my crises at home is proof that my illness is better managed with Crizanlizumab.
“As a by-product it has given me much more confidence – I feel like I’ve been given a set of wings.”
Dr Joseph Sharif, Haematology Consultant and Lead for Sickle Cell at MRI, said: “I am very pleased we’re able to offer this treatment to our patients with sickle cell – the feedback so far, including from Sanah, has been very positive.
“Crizanlizumab has been shown to reduce the frequency of acute sickle pain crises. Sickle pain crises can be severe and unpredictable and often result in hospital admission and patients can become very unwell.”
Now Sanah is hoping to use her experience to raise awareness of the impact which sickle cell can have on people and how they can get help.
She has recorded a special Q&A session – a couple of the hospital team members – Dr Sharif and Grace Akpakpan, Specialist Haemoglobinopathy Nurse Counsellor, were on hand to give her some encouragement.
The videos have been published on the website of Manchester University Hospital NHS Trust and will be shared further on social media.
Sanah, who is from Indian heritage, hopes she can help dispel a widespread myth about sickle cell – that it only affects people from Black or Afro-Caribbean backgrounds.
Patients with Sickle Cell are often predicted to have a shorter life expectancy and are at a greater risk of Stroke and other significant organ complications.
Although most sickle cell patients in England are from Black or Afro-Caribbean background, a smaller proportion are from other backgrounds, including Asian.
Sanah added: “This is a really common misconception. Sickle cell can affect anyone, whether you are Greek, Italian, Arab or Asian like I am.
“I hope I can raise the awareness of this by telling my story. I would like to make sure people like me know they can seek help if they think they have Sickle Cell. I don’t want anyone to suffer in silence.”
When the drug was approved on the NHS, its chief executive Amanda Pritchard said: “This is a historic moment for people with sickle cell disease who will be given their first new treatment in over two decades.
“This revolutionary treatment will help to save lives, allow patients to have a better quality of life and reduce trips to A&E by almost half.
“The NHS has agreed a deal for this drug, so we are able to provide the latest and best possible treatments for patients at a price that is affordable for taxpayers.”
Chair of the Sickle Cell Society, Kye Gbangbola MBA said: “Sickle cell is an underserved and underrecognized condition, so it is great to see new treatments being made available after over 20 years. We hope that this will be the first of many new treatments being made available to improve the lives of those living with sickle cell.”