People with sickle cell anemia produce unusually shaped red blood cells, which can cause problems because they don’t live as long as healthy blood cells and can block blood vessels. The inherited condition is more common in people of African, Asian, and Caribbean ancestry.
Sana Shaikh, 33, from Old Trafford, Manchester, is one of the first to try the new drug crizanlizumab, which is now available to around 5,000 patients with sickle cell anemia in the UK.
Crizanlizumab, only approved by the NHS in November 2021, is the first treatment for sickle cell anemia in more than two decades.
It is given as a drip in a transfusion and binds to a protein in blood cells to prevent blood and oxygen restriction.
Freelance marketing and communications specialist Sana, a patient at the Manchester Royal Hospital (MRI), spoke about how periods of sickle cell pain known as crises drove her to despair before she started taking a new medication.
Sana said: “When I have a crisis, it feels like my body is on fire – I had a crisis in my head, back, arms and legs – it’s really debilitating.
“Sometimes it feels like somebody has a hammer and they drive it into you – they drive it into your body.
“Or it feels like bricks are being thrown at you. It’s throbbing and at times it feels like you’d rather it all be over because you can’t stand the pain.”
A crisis often requires hospitalization so that the patient can be given morphine for pain relief and other treatment to prevent potentially fatal organ failure.
Sana added: “As soon as I heard that crisanlizumab was approved for use by the NHS, I spoke to my hematology consultant and asked to be included in the first round of potential patients taking it for MRI.
“I would do anything to increase my chances of being cured or to improve my health and disease.
“I was lucky to be the right fit for the drug. Since I started treatment, I feel much calmer and more courageous.
“I’m not so afraid of hospitalization if I push myself a little more, whether it’s work or training.
“The fact that I was not hospitalized during 2022 and treated my crises at home is proof that krizanlizumab is better at managing my illness.
“As a by-product, it gave me a lot more confidence – I feel like I’ve been given a pair of wings.”
Dr. Joseph Sharif, Hematology Consultant and Lead Sickle Cell MRI Specialist, said: “I am thrilled that we can offer this treatment to our patients with sickle cell anemia – feedback so far, including from Sanaa, were very positive.
“Crisanlizumab has been shown to reduce the incidence of acute sickle pain crises. Crises of sickle pain can be severe and unpredictable and often result in hospitalization and patients may feel very unwell.”
Now Sana hopes to use her experience to raise awareness about the impact of sickle cell anemia on people and how they can get help.
She recorded a special Q&A session—a couple of hospital team members—Dr. Sharif and Grace Akpakpan, a hemoglobinopathic specialist consultant nurse, were there to support her.
The videos have been posted on the Manchester University Hospital NHS Trust website and will be shared on social media.
Sana, who is originally from India, hopes she can dispel the widespread myth about sickle cell anemia that it only affects people of black or Afro-Caribbean descent.
Patients with sickle cell anemia are often predicted to have a shorter life expectancy and an increased risk of stroke and other serious organ complications.
Although the majority of patients with sickle cell anemia in England are of Black or Afro-Caribbean origin, a smaller proportion are of other nationalities, including Asians.
Sana added: “This is a very common misconception. Sickle cell anemia can affect anyone, whether you’re Greek, Italian, Arab, or Asian like me.
“I hope I can draw attention to this by telling my story. I would like to make sure people like me know that they can seek help if they think they have sickle cell anemia. I don’t want anyone to suffer in silence.”
When the drug was approved in the NHS, its chief executive Amanda Pritchard said: “This is a historic moment for people with sickle cell anemia who will be put on a new treatment for the first time in more than two decades.
“This revolutionary treatment will help save lives, allow patients to improve their quality of life, and nearly halve the number of trips to the emergency room.
“NHS has agreed on a deal for this drug so we can provide the latest and greatest possible treatments for patients at a price that taxpayers can afford.”
Sickle Cell Anemia Society Chairman, Kai Gbangbola, MBA, said: “Sickle cell anemia is an under-appreciated and under-recognized condition, so it’s great to see new treatments become available after more than 20 years. We hope this will be the first of many new treatments available to improve the lives of people living with sickle cell anemia.”