When Iggie Aikhomu was just 18, doctors told her a stem cell transplant was her ‘last possible treatment’ option for her sickle cell disease (SCD) and her only real chance of returning to a ‘normal life’.
By this point, Iggie’s flare-ups (also known as ‘crises’) were putting her in hospital most weeks – or always on bedrest at home – and leaving her with a very low quality of life.
‘It just wasn’t looking sustainable. I don’t think I could have carried on living that way,’ Iggie, now 22, tells Metro.
However, it was her mum who was eventually able to offer her the thing she needed most: a life-saving transplant.
Iggie, who grew up in Nigeria, was diagnosed with sickle cell disease from birth – a rare condition that causes red blood cells to turn into a sickle shape and causes extreme pain as well as long-term damage to organs. As a result, her childhood was very different to other kids her age.
‘I grew up being that child that couldn’t go on a lot of school trips. It excluded me from physical activities – like sports days and like PE classes,’ she says. ‘I would have to sit out of a lot of those because the physical exertion would cause a crisis.
‘My parents had to shield me enough, so I wasn’t in a position where I was getting ill – and if I did, it would mean missing a week of school. So that was something I was trying to avoid.’
What is sickle cell crisis?
Episodes of pain known as sickle cell crises are one of the most common and distressing symptoms of sickle cell disease.
They happen when blood vessels to part of the body become blocked. The pain can be severe and last for several days or weeks.
As Iggie’s father also has SCD, her family knew how to manage it at home.
But this all changed when Iggie moved to the UK as a teenager and started Reading University at the age of 18.
‘It suddenly shifted, and was very, very recurring. I was getting ill a lot of the time,’ she says.
‘This time, I would have to go to the hospital more. Being in university as well, I was on my own a lot more and I had to go into A&E. I also didn’t live close to my family, so that made it a lot harder cope with the illness.
‘It was a rapid decline of my health. It got to the point of having to withdraw from university because I couldn’t keep up with classes, I couldn’t really get myself out of bed. Or if I did, I was ending up in the hospital by the end of the week.
‘At this point we were searching for solutions as I was being admitted to hospital every two weeks. I did have a severe decline in my quality of life, which was why doctors said we needed to find something.’
Naturally, this had a huge impact on Iggie’s mental health. However, she found sharing videos of her journey and experience really helped her get through it – not only as an emotional outlet, but also through the following that formed: a community of other people also living with SCD.
It was someone in this community who gave her the idea of a stem cell transplant – a treatment that isn’t widely available on the NHS.
Although stem cell or bone marrow transplants are the only cure for sickle cell disease, the NHS explain ‘they’re not done very often because of the significant risks involved’.
The main risk is graft versus host disease, a life-threatening problem where the transplanted cells start to attack the other cells in your body.
‘Stem cell transplants are generally only considered in children with sickle cell disease who have severe symptoms that have not responded to other treatments, when the long-term benefits of a transplant are thought to outweigh the possible risks,’ it adds.
Still, Iggie wanted to explore the option of getting treatment privately after a woman got in touch and claimed it had made a huge difference to her life.
‘That was what pushed my family and I to make the first steps and look into that as a final option. I presented it to my doctors and we got the green light,’ she says.
As a final resort to get her life back, Iggie and her family travelled to the Vanderbilt University Medical Hospital, in Nashville, US, for the transplant – a treatment option that costs around $40,000 (£31,218) without insurance. Donations from her family members helped make it possible.
After no success in finding an unrelated matched donor (for the best chance of avoiding transplant rejection), Iggie’s mum stepped forward as a haploidentical donor: a half match donor.
‘We always say “she gave me life twice,”’ explains Iggie. ‘I was already so lucky, as she brought me into the world and took care of me – and then did this.
‘At that point, I think I was just grateful because my mum was the last option. It’s definitely pretty amazing to think that my mum did that for me.’
The gruelling 100-day treatment process involved chemotherapy and radiotherapy to prep Iggie’s body to receive the new stem cells, as well as numerous blood tests alongside the transplant itself.
Not only was this a huge physical toll on Iggie – with her losing weight and experiencing hair loss as a result of the treatment – but the fact this was her ‘last option’ also weighed on her, emotionally.
Reflecting back on this time, she says she felt she had no option but to stay positive. She recalls: ‘I would tell myself and my family: “It’s going to be fine. We’re going to do this, it’s going to be good.”
‘In Nigeria, sickle cell disease is badly managed and has a lot of negative stereotypes and connotations. I grew up hearing my life expectancy was “going to be around 35” and that I was “dying prematurely” – as if it was common knowledge. So my positive mindset during my transplant was more me wanting to believe that there had to be another option. It couldn’t just be the case that if you have sickle cell, you’re damned for life.
‘I wanted to be able to be the testament of going through this coming out the other side.’
Thankfully the transplant was a success and Iggie is now monitored with yearly checkups. She’s also resumed her studies and graduates Reading University this summer, with the hope of working in sports nutrition.
With Monday June 19 marking World Sickle Cell Day, Iggie thinks more awareness and education is needed around incorrect stereotypes, as well as diversifying the stem cell register – so others, like her, can get their lives back.
She continues: ‘I think a message I really wish I could have heard growing up is that having sickle cell is not a life sentence. You can come out of the other side of it. There is another option and there is a way to get better.’
Iggie explains that more research is currently being done in the UK to offer stem cell transplants more frequently over here, too.
She adds: ‘I think we’re slowly stepping into that world where the stem cell transplant could be available under the NHS for kids of all different ages. And this is something they can do early on in life – so you can come out the other end of it and have the rest of your life to just live.’
But in order for this to happen more awareness needs to be provided to encourage people to go on the register, so more people living with sickle cell can find a donor.
Iggie adds: ‘I think a big misconception, or a big stereotype, of sickle cell that, because it’s such an invisible disease, people don’t really see the seriousness of it.
‘People know about blood cancers and Parkinson’s, so if more people knew about the extent of sickle cell – and how it affects people’s lives – maybe more people can help. And if stem cell transplants are the only treatment option for sickle cell, definitely more people should be aware and educated on the topic.’
This is something backed up by Dr Amos Ogunkoya, an Anthony Nolan ambassador and celebrity GP, who says: ‘Sickle cell disease is one of the most common genetic diseases in the UK. Sadly, working in medicine I know all too well that the condition is still widely misunderstood as symptoms can flare up randomly.
‘There are a lot of misconceptions around it, such as that it’s a disease that only affects the Black community. This simply isn’t the case – sickle cell disease can affect anyone.
‘Stem cell transplants might give sickle cell patients a chance of a cure and have been available on the NHS since 2020. Anthony Nolan is working with sickle cell patients to ensure that other patients and families have access to all the information they need to understand the condition and make an informed decision that’s right for them.’
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