A former Scots drag queen has opened up about living with cystic fibrosis, revealing how years of “not being listened to” contributed to their deteriorating health and left them “traumatised”.
When Jordan Daniel turned 17 years-old, they were transferred to the Adult Cystic Fibrosis Service at the Western General Hospital in Edinburgh, leading to a 13-year “fight” for better care.
The DJ and performer-writer, also known as Jordy Deelight, uses their platform to share their experiences of living with cystic fibrosis, advocating for change and raising awareness of the condition. Their work and contributions to both the cystic fibrosis and LGBTQ+ communities were recognised in 2020, when Jordan received the Young Scot Arts Award.
Now, the 31-year-old, originally from Edinburgh, is ready to share what led them to pack up and move city in a bid to find better healthcare.
Jordan is now speaking out after years of “neglect”
Things came to a head in early 2023, when Jordan began having problems with their implantable port — a small medical device placed under the skin that provides easy, long-term access to a vein for treatments such as intravenous antibiotics. When not in use, ports are regularly flushed by healthcare professionals, a procedure that left Jordan feeling “really unwell” each time.
Speaking to Glasgow Live, they recalled experiencing episodes of “fainting, heart palpitations and flushes”. Jordan also became concerned about swelling around their neck and shoulder, which they believed was linked to the implantable port inserted into their chest wall.
After spending hundreds of pounds on physiotherapy to treat the swelling and pain in their neck and shoulder, Jordan remained convinced that the port was responsible for their symptoms and decided to push for answers.
After months of what they describe as “hell”, they eventually had their port removed in December 2023 following multiple infections. After the procedure, they say the pain and swelling around their shoulder and neck “immediately went down”.
Jordan enjoyed a “few months of bliss”, before their health yet again took a turn for the worse. In the summer of 2024, they coughed up a significant amount of blood, “the most in over ten years”, Jordan said. Their weight had dropped and their oxygen saturation level was at times sitting dangerously low at around 87 per cent.
Jordan then began to worry about having aspergillosis, a mould infection which can cause severe lung inflammation, increased mucus, and breathing problems.
Jordan says the Glasgow Adult Cystic Fibrosis Service is “incredible”
The 31-year-old expressed their concerns to medics, however says it was “weeks of tug of war”, with staff saying there was no evidence of aspergillosis in tests. Come August 2024, aspergillosis was found to have been growing over a course of months in previous tests of Jordan’s, by this point they were “extremely ill with sepsis” and hospitalised at the capital’s Western General Hospital.
After treatment, Jordan was finally able to focus on getting better. Following years of “neglect and gaslighting”, they began considering whether a move to Glasgow might offer a fresh start and access to the city’s CF service. By September 2024, the idea was becoming a serious possibility, and the following summer, Jordan took the leap and has “not looked back since”.
Jordan praised the the Adult Cystic Fibrosis Service based at the Queen Elizabeth University Hospital in Glasgow, saying the team “restored” their faith in the NHS.
“The care I’ve received in Glasgow has been incredible”, said Jordan. “The CF team go above and beyond for their patients, and they’re so proactive. NHS Greater Glasgow and Clyde has restored my faith in the NHS.
“Staff are also very good with pronouns and are always inclusive – they have been nothing but respectful towards me. I now trust the doctors and nurses around me, it reminds me of my paediatric team when I was a child.”
They continued: “As a public figure in the cystic fibrosis community, I can only hope by sharing my awful experiences that my previous service can use this as a learning curve to do better, listen to their patients and work with them – not against them. For far too long people with CF – or any long term health conditions – have been ignored and told they don’t know their bodies.
“I have lived with this condition for 31 years – longer than some doctors have been practicing. I know my body. This was clearly demonstrated by my concerns and subsequent decline as a result of being dismissed.
“I hope no one else ever has to go through what I went through and can live their life with dignity and the right healthcare they deserve.”
Jordan is now working with a psychologist in Glasgow to address the medical trauma they experienced, recognising that they may be experiencing symptoms of PTSD as a result of their experience with Edinburgh’s CF team.
They’re sharing their story to advocate for change and raise awareness of the condition. Jordan continues to use their platform to amplify the voices of the CF community and create greater space for patient perspectives and lived experience.
Jordan has since launched legal action against NHS Lothian’s Adult Cystic Fibrosis Service.
Dr Tracey Gillies, Medical Director, NHS Lothian, said: “We are sorry to hear about Jordan’s concerns regarding their care. As there are ongoing legal proceedings relating to this case, we are unable to comment further.”
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