What a founder who lives with sickle cell wants health policy leaders to understand about the years no clinic covers.
When Shorna Besa started university, she thought she was prepared. She had registered for Disabled Student Allowance, made a plan with the university’s disabled student support team and told her haematology team in London that she was going. She started her undergraduate degree, in her words, “during the big C”, which made starting out harder still. Then, shortly after moving onto campus, she ran out of her medication. “The smaller things that I didn’t have in place meant that I put myself in some compromising positions,” she has written. She completed both her degrees, with the universities’ support and, in her words, “through learning the hard way sometimes.”
This month she released the thing she says she would have needed then: a university preparedness checklist for students with sickle cell who are starting university in the UK, free to download from the Sickle Synced CIC page. “Don’t just prepare for university; prepare for university and your health,” she wrote when it went live.
Shorna’s argument is that there’s urgency behind sickle cell and that the people who set health policy don’t feel it. The numbers sit with her. NHS England describes sickle cell disorder as the fastest-growing genetic condition in the UK, affecting approximately 19,000 people, around 10,000 of them in London.
Shorna is the Founding Director of Sickle Synced CIC, a community interest company she registered in London in January 2026. She holds an MPH, and she lives with the condition herself. “I am currently building a community interest company to help bridge the gap in individuals’ knowledge on sickle cell as well as support individuals with sickle cell navigate life outside of clinical settings,” she says. So far that means the checklist, a website, a YouTube channel coming up to two years old, events that bring people with sickle cell into the same room, and a podcast about to launch. She knows who she wants reading this, and what they should conclude when they finish.
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Explaining It Over and Over
Sickle cell predominantly affects people of African and Caribbean descent, and that’s where Shorna finds the misunderstanding hardest to take. “Where I’m most disappointed in seeing the mistake of being misunderstood is within the black community,” she says. “It’s a condition that I have to explain over and over again to many individuals of black descent.” It follows her into the surgery and into work. “My immediate needs have been ignored when engaging with primary healthcare professionals, I’ve been misunderstood at work. I’ve seen misunderstanding of the condition embedded in peoples beliefs.”
She isn’t describing a private experience. The 2021 parliamentary inquiry No One’s Listening, published by the All-Party Parliamentary Group on Sickle Cell and Thalassaemia with the Sickle Cell Society, found low awareness of sickle cell among healthcare professionals, and heard that patients regularly have to educate staff about the basics of their condition while in significant pain.
What that produces, Shorna says, is a set of stories about people like her that she didn’t write. “There are so many different narratives that have been painted about us from being lazy to being incapable to being drug seekers. It’s exhausting to keep up with what everyone thinks about someone who has sickle cell.” She says this to the policy reader directly, and with no illusions about them. “Because of how misunderstood we are, I don’t know what unconscious bias the reader has about me and with people that have sickle cell.”
“By the time they finish reading, I want them to understand that with my work, academic and lived experience, I am more than qualified to make this dream, that is way bigger than I am, a reality.”
Shorna Besa, Founding Director, Sickle Synced CIC
The dream, in her words, is “to make the world a safer place for individuals living with sickle cell.” Her answer to the bias is a company.
Outside the Clinic
When Shorna announced that the CIC was registered, she set out five pillars for it: educating the general public so they understand the condition and can support people who have it, encouraging people to know the signs of a sickle cell crisis, reducing poorer health outcomes through advice and mentorship on navigating life with the condition (especially for those transitioning into adulthood), encouraging blood donation in the African/Caribbean community, and educating that community on sickle cell trait testing before conception.
The third pillar is the one she says nobody else is standing on. “Specifically supporting individuals outside of clinical settings is something that I don’t see a lot of people in the sickle cell community do hence why I have made a start on doing this,” she says. “I have been through the transition of going to university, I’ve started working and there were a lot of things that I had to find out the hard way. I want to help give individuals with sickle cell a fairer chance at adult life.” The unconscious biases she describes, she adds, feed into how a young person with the condition “could feel like the world is working against them.” That’s why the support is aimed at the years when someone with sickle cell becomes an adult.
The shape of that support comes from an event she ran last year, called Becoming Me: Navigating Adulthood with Sickle Cell. What the people who attended enjoyed, she says, was “the sense of community and being able to connect with people who also have sickle cell.” She took that as the rule. “From this event, I make sure that my events and what I do in the community brings people together with sickle cell to help them build connections and also include an element of peer support.”
Alongside the events there’s the Sickle Synced YouTube channel, which she has been building for close to two years, not always consistently, and which she has written about with some pride: “What I love most about YouTube isn’t just creating the videos. It’s the little community that has grown around them.” There’s the website, which went live this month before it was full. “I didn’t want to put it out without it being 100% completed at first,” she wrote. “But I had to catch myself when I realised that I was being too much of a perfectionist.” And there’s Sickle Tea, a podcast she co-founded and co-hosts with her friend Angel Nkwanzi, who is also a sickle cell and FND advocate, due to launch soon. “Sickle tea is where we’ll spill the tea on all things sickle cell,” she says, and it’s where people will hear the condition through her lived experience and her friends’. The company is nine months old. What sits behind it is longer.
Two Degrees and a Caseload
Shorna has, as she wrote, “survived university twice with Sickle Cell disorder.” Her post on it thanks the University of Northampton and The University of Manchester, and her profile carries an MPH. From May 2024 she spent a year as a social prescribing link worker in London, and from September 2025 to March 2026 she was an INT caseworker with the NHS. The company was registered in the middle of that last role. In July 2026 she went back to social prescribing, and she now works as a link worker in a primary care network in the NHS.
The second degree nearly didn’t happen. There was a time, she says, right after she started her master’s, when she wanted to drop out. She was going through a lot, and it was her mood more than anything that almost pushed her out, “but it was mind over matter that got me into the headspace which successfully carried me to the end of my degree.” She had always wanted a master’s, and more than that she wanted to prove to herself that she could achieve what she set out to. “Sickle Cell and other people’s limiting beliefs weren’t going to stop me from achieving that.”
She didn’t see it coming. “If you told me that I would be a founder this time last year, I would’ve laughed,” she wrote when the registration came through. “Especially if you told me that I would be a founder for a business based on Sickle Cell. However, through lived experience and my background in public health, I found that I am the perfect fit to create positive change in the Sickle Cell community.”
In June 2026 she joined Circle Collective’s Elevate 100 as a Youth Advisory Board member, a role she took because of what she’d seen at work. “I’ve experienced the employment world myself; not only as a young employee, but as a disabled employee too,” she wrote. “I want employers to recognise young disabled people for their skills, potential and what they can contribute, rather than making assumptions about what they can or can’t do because of a disability.” That sentence is the personal rule as much as the board’s brief.
The Narrative She Won’t Accept
Asked for one habit a colleague would recognise as very her, Shorna gave a refusal and a promise.
“I refuse to let people paint a narrative about me that I’m incapable of working because of my health. If I feel that I’m being mistreated in the workplace, I am going to dispute it.”
Shorna, Founding Director, Sickle Synced CIC
It’s the same conviction she wants health policy leaders to take from the piece. She wants them to understand, she says, “the power that lived experience has in order to change the trajectory of how people with sickle cell are understood and treated by others.” This September she has written that she’s glad to see more people with lived experience using their voices for sickle cell awareness, “including myself.”
The line she wants to own is the one on her website and under every post: she helps you to become and Stay Sickle Aware. She says it came to her while she was writing the CIC’s mission and vision statement, and it has stuck since because it’s a to-the-point way of telling people everything they have to do to understand the condition and support the people who have it. It’s also the whole company in five words. Building it, in her view, was never going to be one director’s work.
Directors Before Anything Else
Someone starting out in health advocacy, or setting up a community interest company, gets one piece of advice from Shorna: “be ready to have directors who have the same vision as you ready before or shortly after you register because you would probably propel more in the beginning stages of having a CIC with more than just you as a director.”
She is taking it herself. This month she put out an open call for two new voluntary directors to join the Sickle Synced CIC board, to help shape its strategic direction and support its growth and sustainability. “You do not need previous experience as a Director,” she wrote.
“What matters most to me is that you believe in what Sickle Synced is trying to achieve, are willing to contribute and can work collaboratively as part of a Board.”
Shorna, Founding Director, Sickle Synced CIC
Two positions, one shared mission, as she put it. The board is the next thing she is building, and not the only one.
Where Shorna Is Now
It’s Sickle Cell Awareness Month, and Shorna’s September is stories, events, conversations and resources. She has given her followers five plain things to do: engage with content from people with lived experience, donate blood if eligible, find out their sickle cell trait status, offer encouragement, and support an advocate. The checklist is out. The website is live and, as she wrote, will “grow with the business in public.” Sickle Tea is about to launch. The two director seats are open.
The reader she wants is a health policy leader, and the conclusion she wants them to reach is that her work, her academic training and her lived experience together make her more than qualified to carry a dream she says is bigger than she is.
One thing outside the work, which she offered as unrelated: “I will forever stand for the natural hair movement. I adore my natural hair and I want other black women to adore theirs as well.” And what’s next, in the line she wants quoted: “I’m building Sickle Synced from the ground up.”
Five Lines from Shorna’s Diary
“I refuse to let people paint a narrative about me that I’m incapable of working because of my health.”
“It’s exhausting to keep up with what everyone thinks about someone who has sickle cell.”
“Don’t just prepare for university; prepare for university and your health.”
“Learning about Sickle Cell doesn’t have to be complicated.”
“Sickle Synced CIC is about making the world a safer place for people with sickle cell.”
From the Diary of Shorna Besa
Shorna Besa is a London-based sickle cell advocate and the Founding Director of Sickle Synced CIC.
| Role | Founding Director, Sickle Synced CIC. Co-Founder and Co-Host, Sickle Tea |
| Based in | London, United Kingdom |
| Also with | NHS, social prescribing link worker in a primary care network. Youth Advisory Board Member, Circle Collective |
“Become and Stay Sickle Aware.”
Editor’s Note
We chose Shorna Besa because she names the reader she wants and the bias she expects that reader to bring, and answers both with things that exist: a checklist, an event, a channel, a company with five stated pillars. Her account of running out of medication on campus is the kind of detail that policy documents leave out and that a person with the condition cannot. What convinced the editors is that she works on the part of sickle cell that sits outside clinical settings, the transition into adult life, and says plainly that few others do. We print her words as she gave them.
Executives Diary, Editorial
