By Leo Hynett
Tell us about your story – as a Sickle Cell Disease patient and advocate for the Eleven community?
I have sickle cell trait. Since the age of five, I have always suffered full-blown symptoms of sickle cell. I’ve always been told that it’s very rare for carriers to suffer symptoms. Because of that, it’s always been drilled in me to just deal with my crises and pain at home. That’s always what I’ve done, even with the major ones until they’ve escalated to the point where I’m needing hospitalisation because of complications, such as having pneumonia.
It wasn’t until I ended up fighting for my life in the ICU with pneumonia for two weeks that I decided to take control of my situation. I just started researching ways that I could build up my haemoglobin levels as much as I could. I wouldn’t have made it if it weren’t for the resources shared by other members of the community.
Tell us about your involvement with, and as part of, the Eleven Community?
I connected with a member of the Eleven Health community team to ask if they had ever met anyone with the trait who suffers from symptoms. Because I do.
The team were a major support to me throughout a particularly bad period. The community has since become my support network, my sickle cell family. And they accepted me as part of the community, acknowledging that I suffer. And I’d never had that before.
Since then, I’ve been helping to raise awareness with family members and friends who have also been suffering in silence.
How did it feel to be announced as a finalist for the Awards? How did you, your family and your loved ones react?
It means so much to be recognised. A lot of people don’t realise that pain crises can cause a lot of trauma. So, to be recognised shows that we’re making a difference.
In my eyes, I feel like I’m not making enough of a difference at times. So to be recognised is a boost. It’s a confidence boost as well. Regardless of how small, I’m making an impact somewhere. So, I just really feel honoured.
How would you use being a finalist of this award to support others and impact powerful change for Eleven Health Community?
People in the community know that regardless of how small you feel that every contribution helps. It’s boosted me and others to keep going, even when you feel tired even when you feel like you can’t go on. It’s helping people to reach out, share our stories.
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 do to address it?
From a trait perspective, it’s uniting people like me with people with full-blown sickle cell as one community. Because that’s been a challenge that I’ve had over the years, where I’ve joined forums in the past and felt like I’ve had to keep quiet.
I think the challenge for many in the sickle community is getting access to doctors and having the education rolled out to the medical staff who treat us and who care for us. And I think the same goes for research as well, especially with regards to trait.
In your opinion, how does Eleven’s technology support the physical, emotional and psychological needs of the community?
I think it’s phenomenal, because you’re able to record your emotional, mental or physical changes. Being able to record your symptoms at the time that you’re having them, or you’re feeling really low, gives our medical teams a better understanding of what we’re going through.
The technology we’re working with also allows us to keep a record of our health conditions over time. Having the factual, black and white medical backup will be transformational for the community.
What words of support and encouragement would you give to anyone on the fence about joining Eleven?
I would say don’t hesitate. Eleven Health is a family, it’s a community that welcomes you. The more people that join, the better because it’s helping so many people to reach better health outcomes.