People with sickle cell don’t get enough support, so I’m tackling the issue myself

"It is so painfully clear to me that families impacted by sickle cell need more resources, research and support," says Funmi Ullam

Vanessa Kesa and her son

“DON’T WORRY, you have at least six months with your son before he begins to exhibit the symptoms of sickle cell,” those were the words a hematology specialist said to me.

My head was reeling. It felt as if someone had opened a trap door and I had fallen in. 

I was a new mum. My baby boy Elijah was two weeks old and we had been given the diagnosis of a chronic condition. The first thing I did was tap into my faith and pray.

When my son was three, he experienced his first sickle cell crisis. My partner and I found ourselves admitted to the paediatric ward, watching our son’s little body riddled with pain. I remember having three sleepless nights because my son was unable to lie on a bed, so I held him to try and comfort him.

With a medical team, we had to work out the right combination of interventions to help bring my son’s pain under control. 

Nine years later, my family have experienced the worst of this condition. It affects every area of our lives. Alongside the unpredictability of the COVID-19 crisis, we try to navigate normal life, work, education and hospital care.

Along the way, we’ve learned how to target the root causes of this condition, and I’m glad to say that Elijah is now in less pain, and doesn’t visit the hospital as much though we still have to manage frequent low level pain at home.

Still, it is so painfully clear to me that families impacted by sickle cell need more resources, research and support.

Just last week Richard Okorogheye, a 19-year-old with sickle cell was tragically found dead in Epping Forest. He had been shielding due to his condition, and it has been reported that he’d been struggling with his mental health.

Evan Smith was only 21. He died on April 25 2019 at North Middlesex Hospital, in north London after he developed sepsis. The inquest into his death found he would not have died if medics had offered him a blood transfusion sooner. 

Sickle cell is one of the most common genetic conditions in the world, but it is especially common among people of African descent. I can’t help but wonder if that’s why there just isn’t enough support for families like mine.

Now, I’ve decided to take action. I set up my charity to fund critical research and provide support. We launched by providing COVID-19 care packages to families like mine, who are affected by sickle cell.

We do things like introduce parents to holistic therapies to improve their wellbeing, and we hope to provide vital services like hospital kit bags, winter boxes and access to wellness bootcamps.

At the moment, we’re also crowdfunding for an app to track pain and other key metrics of those with sickle cell disease. Digital healthcare can empower both patients and clinicians, because it means medical professionals can see crucial data.

My hope is that the app will help people with sickle cell, like my son receive better support and treatment.

Through the charity, I’d like to create a community of families, and improve the current system of fragmented care.

Vanessa Kesu started Crescent Kids to provide vital support to children and families impacted by sickle cell and thalassemia.

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