Generic selectors
Exact matches only
Search in title
Search in content

Eleven Health Awards Gala 2021 Finalist: Sarah-Jane’s Story

@Sicklecellunite

By Leo Hynett

Tell us about your story – as a Sickle Cell Disease patient and an advocate for the Eleven community?

I’m 27 years old, was born in London and have Ghanaian heritage. I am the last of four children, and the only child of my parents who has Sickle Cell.

I was diagnosed at birth with Sickle Cell and had my first crisis at a very young age. Since then, I’ve been in and out of hospital. Through my teenage years, I sat my GCSE’s and public exams while I was in hospital as well. I’ve learned how to manage my Sickle Cell through these experiences – and have also managed to gain a Diploma in child care, as I wanted to be a nursery nurse! When I started working with children, I found that I would often catch illnesses like chest infections so easily, as my immune system was so low. After some time and hospital admissions later, I made the difficult decision to explore other ways to support healthcare.

During a period of 3-4 years, when I was going in and out of hospital, I started speaking about my experiences more openly. I remember sitting in a hospital room with my sisters, and it became clear to me that more needed to be done to spread awareness and inspire people to about Sickle Cell.

Because of this, I decided that I wanted to be someone who could speak out on behalf of the community. So, I started an Instagram page, Sickle Cell Unite, to share my story with others and to help remove the stigma around the condition. The community has since done amazing things, including getting together to do a blood drive that will help support our family and friends.

What does it mean to you, to be recognised as a finalist for the Eleven Health Awards?

It’s pushed me to keep going in the work we’re doing to support everyone with Sickle Cell. Being recognised for the awards has confirmed in my mind that everything we’re doing for this community is for a good reason.

For me personally, it’s inspired me to continue being a warrior for the entire community.

Going forward, what do you think will be the biggest challenge for the Sickle Cell Disease community, and how do you think you and the Eleven community can help?

I think the current challenge we face as a community is the stigma around the condition. We are definitely treated differently from people with other conditions, and we need to take control of this.

We can overcome this by working together to raise awareness, and by using technology that supports us.

In your opinion, how does Eleven’s technology support the physical, emotional and psychological needs of the community?

I think the concept is amazing.

The watch sounds like such a great thing to have.

When you’re at home, you’re feeling sick, and you start panicking…you need the tools to monitor exactly how you’re feeling and what’s causing you to feel this way. When we’re at this stage, it’s important for us to know our heart rate and oxygen levels, so that we can manage how we look after ourselves.

The data also helps to demonstrate that what we’re going through is real, a real problem that needs to be addressed. It also helps to remove the stigma often attached to people with Sickle Cell. There is a really bad and untrue reputation of the community; the data proves that we need the appropriate care urgently and for a reason.

What role do you think Eleven and our technology will play in supporting future clinical success for Sickle Cell Disease?

It will help nurses and clinical teams to understand our condition as we experience it. This will help us to get the help that we actually need, based on physical evidence.