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Eleven Health Awards Gala 2021 Finalist: Gilde’s Story

@gilde_x

By Leo Hynett

When we caught up with Gilde, she was in the hospital. We offered to postpone our call but she was determined to speak with us and give back to this community. She’s such a valuable voice and we’re proud to have her among our finalists!

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

Growing up, Sickle Cell was never a major part of my life. We didn’t speak much about it at home at all; I just knew I was sick and had something that caused me pain.

It was only when I went away to uni and was forced to become independent with my care that I started asking questions to learn what SCD actually was. When I had my first crisis in uni, I realised this is actually quite a serious condition and it scared me that no one knew anything about it, not even the doctors at the hospital. They didn’t know how to treat me and I had to be my own advocate. It was my voice that was dictating my own care.

When I came back from uni, my sisters encouraged me to talk more about SCD because we realised no one knew anything about it. When I opened my Instagram page sicklecell_sundays I started to get to know other people and their experiences and I realised how bad living with SCD actually was in terms of medical neglect. And I’ve seen firsthand how bad the care can be. 

I decided to try and be an advocate for us because we need people to speak for us otherwise nothing will change. That’s grown from social media to podcasts and even the BBC documentary which I still can’t believe I got to do to this day.

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

The first time I saw the benefit was before I even had my own account. I had a friend that used Eleven and she was telling me how it basically saved her life.

Her watch was picking up abnormal ECG readings, but she felt fine. Because of her watch, she went to the hospital to get checked out. They kept her in to monitor her and she ended up being really ill, having a seizure, and staying in for nearly two months.

It was then I realised she wouldn’t have known to seek help without her watch; Eleven saved her life. I knew I needed to join right away.

Mentally, it gives me a lot of reassurance. I get a lot of anxiety when I start feeling pain and used to check my oxygen with an oximeter at home, but now I can just use my watch wherever I am. I feel a lot more at peace and I can sleep better – before the panic used to keep me awake. 

I use it a lot in hospital too to track my sleep interruptions and see if they match up with when nurses came in or if it was pain waking me.

How did it feel and what does it mean to you to be announced as one of the finalists for awards?

I was in hospital when I got the call and I literally cried, I could not believe it. Just being considered made me so happy because last year Sickle Cell really took over my life – I was in a lot of pain and in and out of hospital. So being recognised for all the things I’ve done while I’ve been really unwell meant a lot to me. 

Honestly, it really, really touched my heart. I’m so grateful to be nominated alongside all these amazing people.

How did your family and those around you react when you got nominated?

They were so happy for me – they always had high hopes for me and they were super, super excited and just really proud.

When I initially started talking publicly about SCD, my parents were really apprehensive about me speaking so publicly about my health, but now their whole opinion has changed and they’re super proud of me.

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

I think the biggest challenge, really, is to actually implement change in hospital settings. There was the No One’s Listening report and attempts to make change happen, but the realities are often still terrible – A&E the other week was a nightmare.

We need change, and it needs to happen now. And that’s where we all need to come together, we need so many voices it’s unbelievable. 

Eleven’s work can hopefully help with future treatments and interventions; with the power of this community behind us, we really could make a change. But we definitely all need to work together and raise our voices because we’re so loud and powerful together.

What support or encouragement would you give to anyone who’s on the fence about joining Eleven?

This is the first time I’ve ever seen anything like this, I can’t believe how much you’re doing for us. I talk to everyone with SCD about Eleven, it’s so helpful. 

Tracking with the watch is so beneficial, and then there’s counselling available on the site, and having your medical records on your phone is just so useful. When all that is available to us for free, why not take the opportunity?