With thanks to Sanius Health for the spotlight feature
Sanius Health - September 20, 2023
For Sickle Cell Awareness Month, Sanius spoke to advocate Nneka Smith.
Nneka Smith has always been sports mad. She started out on tennis and athletics, playing with the rest of her family, until she settled on netball. Her preferred position was goal defence, and until recently she was playing at a regional level. This love of sport took her, in her early twenties, to Loughborough University, the Midlands-based educational institution that counts Paula Radcliffe, Tanni Grey-Thompson and numerous other Olympians, Paralympians and world champions amongst its former students.
But one day, walking into a lecture aged twenty-one, she had an asthma attack. Nneka was puzzled by this given that she had no prior history of problems with her breathing, and when she was told she had sports-induced asthma, her confusion deepened, given she’d only been walking to a lecture. Later, she was admitted to hospital with acute hip pain. While there, a medic joked that the people who came in with hip pain usually had Sickle Cell Disorders (SCD). They gave her a dose of morphine and later sent her home on crutches.
It wasn’t until four years later that these apparently isolated incidents were finally linked, and Nneka was diagnosed with SCD. She was giving blood with some friends and got a letter from the clinic a few weeks later informing her that her blood had been destroyed, and that she had been unknowingly living with SCD. One reason the diagnosis was unusually late was that Nneka has Haemoglobin S-C, a variant of the disorders that was identified only relatively recently.
Those living with Haemoglobin S-C in previous generations were often told they were only carriers, as the heel prick testing done in infancy only identified Haemoglobin S - as Haemoglobin C and other variants were still being discovered. Perhaps this was one of the reasons that led Nneka to advocacy, as she shares her concern that ‘there are many people out there who…still aren't fully aware that they aren't just carriers’.
However a deeper symptom of Nneka’s late diagnosis might be found in the medic’s careless joke that she might have SCD when she was 21, and the double opportunity missed by medical professionals to give her a correct diagnosis. There’s a culture of complacency and a widespread lack of understanding in treating SCD in the UK that’s undoubtedly tinged with racism. For context, there are more than 15,000 people living with SCD in the UK and a predominant number of these people have African or Caribbean heritage. For evidence of the medical inequity at play, we might take the example of cystic fibrosis, another genetic condition without SCD’s propensity to appear in global majority communities. There are 10,500 people living with cystic fibrosis in the UK, who have access to 511 approved treatments. Meanwhile, patients with SCD are limited to just 5 approved treatments.
Nneka has become an important advocate for the wider SCD community, and the aforementioned complacency and lack of understanding is often present in her conversations with other stakeholders. On a call with the European Medical Agency as part of a patient panel, she noted their use of the term ‘sickling’ to describe someone with SCD, an outdated term that the SCD community have rejected, and their tendency to prioritise certain types of SCD as being more ‘severe’ than others - an unhelpful way to view patients suffering with any condition. Nneka wants to see a general building up of the research and knowledge base surrounding SCD that takes into account lived evidence (combining qualitative and quantitative data) - which can be vital. ‘There is a real movement within healthcare… around lived experience. And I think it's really important that we not just hear what those living with these conditions are saying, but we're actioning it. And we're understanding and actively listening and not just hearing the bits we want to hear’.
This focus on the lived experience of patients as an important factor in improving care chimes with Sanius Health’s own mission. Nneka has only been using the Sanius app for a few months, but reports positive initial impressions. As someone who remains active - she is a qualified netball coach - the app allows her to record levels and go about her life with the security of knowing her data is being monitored for any warning signs, without having to constantly input information manually.
Our conversation ended with a discussion of Sickle Cell Awareness Month - what message would Nneka like to put out there for people to understand? ‘What I want people to think about is - what are those small wins you’ve had?’. In general, the discourse around SCD is so focused on how far we have to go, but Nneka’s days as a teacher have reminded her that it’s important to acknowledge the little victories along the way. ‘Okay, you might have avascular necrosis in your hip. It sucks! I've had it. I've had core decompression surgery. But I'm able to play netball again. That's my win’. Ultimately, as Nneka astutely asserts, ‘we've got to make ripples in order for those big changes to happen'.