A mum says it took a near-fatal cancer diagnosis for doctors to address her painful lifelong condition.
At just three years old, Blessing Abdul, now 34, was diagnosed with sickle cell disease - an inherited blood disorder that results in abnormally shaped red blood cells. This condition can restrict blood flow, leading to a heightened risk of infection, potential organ damage, and significant pain. Marketing creative Blessing's disorder caused her to suffer 'relentless' and agonising episodes known as sickle cell crises, which would sometimes last seven days or more.
These crises - which would see Blessing endure 'extremely sharp' stabbing pains – once every three or four months, escalated when she reached her mid-20s when they increased to one every two weeks. Everything changed however when, at the age of 26, Blessing received a terrifying cancer diagnosis, with doctors informing her she had gamma-delta hepatosplenic lymphoma - a rare and aggressive form of blood cancer.
She was given a '30 per cent chance of surviving', however, her cancer journey also provided a long hoped-for cure. After undergoing chemotherapy and a bone marrow transplant - one of the only known cures for sickle cell disease – Blessing has thankfully remission and, in the seven years since, she's only had a handful of crises.
READ MORE: Man given 'gut-wrenching' diagnosis 20 years after being infected without knowing
According to Blessing, 'a whole village came together' to support her in the wake of her cancer diagnosis, something she hadn't experienced during her long and lonely journey with sickle cell disease. Blessing, who moved to the UK from Nigeria when she was one years old, said: "It makes me angry because I've been going through this my whole life, I've had no-one to talk to… and they didn't tell me about half of the things that I could be entitled to.
"One of the specialist cancer nurses introduced me to so many schemes that would help people with cancer, and I found out that they can help people with diseases full stop, so why was none of this introduced to me when I had been coming in and out of hospital for many years with sickle cell? It was almost like, 'figure it out on your own with sickle cell, but with cancer, we're completely here to walk you through it'."
After Blessing began experiencing 'pain episodes' from the age of two onwards, so 'excruciating' that she would cry out at night, her 'fearful' parents had 'no idea' what was wrong, and weren't given any answers, even after taking her to the hospital on several occasions.
After one of Blessing's limbs started to swell, the then three-year-old was taken back to the hospital once again, with further testing leading to her official sickle cell disease diagnosis. As per the NHS, there are approximately 17,000 people in England living with sickle cell disease, with diagnoses generally being more common among those with black African, Caribbean, Middle Eastern and South Asian heritage.
Blessing explained that sickle cell disease was not spoken about at the time she was diagnosed, and her parents were not 'aware of how to look after it' due to lack of information and advice. Whenever she suffered a crisis, therefore, her parents would ring for an ambulance.
She remembered: "I would lose complete control of looking after myself, depending on where the crisis is. If it was in my legs, I would have to be in a wheelchair, if it was in my arms, I could no longer bathe myself, so it was very daunting whenever these pain episodes came. Then I'd be pulled out of school and no-one understood why… nobody knew what sickle cell was."
As a youngster, Blessing was left feeling like 'outcast' with 'no friends' at school, with the subsequent social anxiety she developed causing her to fall 'into a deep depression'. Despite being constantly in and out of hospital in the years that followed, each visit required a 'frustrating'. in-depth explanation of Blessing's condition, crisis, and treatment.
Following her cancer diagnosis, Blessing was brought in for treatment immediately, undergoing three gruelling rounds of chemotherapy as well as a bone marrow transplant in March 2017. Stem cell or bone marrow transplants are the only cure for sickle cell disease. however, they aren't carried very often because of the risk factors involved, according to the NHS says.
In the years since Blessing was diagnosed, NHS England has announced the launch of new expert clinics to provide specialist care for those with sickle cell disease. As of May this year, thousands of sickle cell disease patients are to be offered new 'life-changing' treatment through the NHS. Blessing ended up developing a near-fatal infection following her transplant – but says her gratitude journal and Christian faith helped bolster her strength.
Thankfully, there have been 'no signs' of cancer since Blessing's transplant, and she's since given birth to her now five-year-old daughter Brienne. She had previously been advised this might not have been possible due to her sickle cell disease. Now a campaign ambassador for the I am Number 17 campaign, which calls for equitable access to care for those living with a rare disease, Blessing is 'super proud' of her work.
She's also had 'barely' any crises in recent years - which she attributes to the transplant, and has remarked that her cancer diagnosis made her realise how much more needed to be done to support sickle cell disease patients.
Blessing reflected: "My cancer journey introduced me to a wellbeing standard I was unaware is possible during my sickle cell journey. A whole village came together for my lymphoma journey, and I wish this same village was present in my sickle cell days.
"I think it's important that women, people, are able to see themselves and understand that you're not alone and people are fighting for you."
Professor Bola Owolabi, NHS director for health inequalities, has given the following statement: "Sickle cell disease can have a huge impact on people's lives and the NHS has worked hard to make life-changing treatment available as part of our wider drive to improve the quality and experience of care for sickle cell patients.
"This includes securing the latest world-leading drugs and a scheme to help with prescription costs, 24/7 expert clinics for patients in sickle cell crisis which allow them to bypass A&E to receive pain relief, digital care plans so patients don't need to repeat their stories, and cutting-edge blood group genotyping to reduce the risk of adverse reactions to blood transfusions.
"I am determined that the NHS continues to make progress in the support it offers to people with sickle cell, so every individual with this disease feels able to seek help when they need it."
To find out more about the I am Number 17 campaign, initiated and funded by Takeda together with rare disease advocacy groups from across the UK, visit: iamnumber17.org.uk/elevate-care-for-rare.
Do you have a story to share? Email me at julia.banim@reachplc.com
For more information or support about cancer, you can contact Macmillan Cancer Support or you can call 020 7940 1760 for advice.
READ MORE: Jamie Theakston's wife breaks silence after cancer diagnosis with strong five-word statement
