The Unseen Battle: Wayne Jones’ Fight to Redefine Vasculitis Awareness
“This is Bigger Than Me: This isn’t just my story. It’s ours. The partners, parents, kids, and friends who suffer in silence. The patients who hear, “You don’t look sick.” The professionals who want to help but don’t have the tools. I’ve made it my mission to build bridges between them all.” – Wayne Jones
Wayne Jones, a man living in the U.K. who once thrived on physical prowess and professional success, found his life forever changed on October 27, 2022. What began as a routine assessment after a rugby injury unexpectedly revealed a devastating truth: he had vasculitis. After years of vague symptoms, the diagnosis of granulomatosis with polyangiitis (GPA) with potential multiple organ involvement was a shocking, yet in some ways, validating moment.
A Shocking Diagnosis and Prognosis
“I’ve never seen it this advanced, this bad in a fit and healthy 30-something man,” a leading rheumatology consultant told him, delivering a stark prognosis: a 12-month life expectancy. This unpredictability became Wayne’s daily reality, with days of debilitating illness followed by brief moments of energy.
The initial shock ignited an intense determination in Wayne. From a naturally private individual, he transformed into a passionate advocate. He recognized a crucial turning point where the mental health impact of his illness and its effect on loved ones became as significant as any physical pain. This propelled him to make a difference.
Wayne’s mission is clear: to dismantle the misconceptions and stigma surrounding vasculitis. He speaks powerfully about the “guilt and shame” patients are made to feel, and the constant need to defend an illness that is often dismissed. “A fat, useless disgraced being, unable to walk my dog, help my daughter with her homework or take my wife out for a meal,” was how he described himself.
The “Rare Disease” Misconception
For Wayne, the official narrative of vasculitis as a “rare” disease is an oversimplification. “Almost like discussing Lord Voldemort over breakfast at Hogwarts,” he remarked about the reluctance to acknowledge the disease. ‘What’s so rare is the recorded figures and diagnosis!” he added.Cara felt relieved at having an explanation for her suffering. “In hindsight, I thought I would just take treatment and ‘get over it,” she said.
He’s exasperated that even a simple Google search for GPA often leads to outdated theories, adding humiliation to an already immense burden. “Google only shows two theories for ‘what is GPA and how do you get it,’ one being self-induced result of cocaine addiction. As if the patient wasn’t already dealing with enough anxiety they now have to defend or feel humiliation, guilt and disrespect.”
Advocacy Through Digital Media
Undeterred by his own rapidly declining health, Wayne has poured his energy into awareness initiatives. Within weeks of his diagnosis, he began filming short clips for social media, laying the groundwork for his growing public platform. He even mentored a single mother to manage his digital content, helping her build a portfolio that led to a full-time role at Wrexham Football Club – a true success story born from his advocacy efforts.
This initial venture evolved into a series of impactful podcasts and public speaking engagements. Last May, Wayne committed to a 30-day social media campaign, posting daily facts and figures about vasculitis, followed by the personal and familial impact. The initiative ended with a live raffle on Facebook and TikTok, a remarkable feat given he had been severely ill just moments before.
Wayne’s ambitions stretch far beyond personal storytelling. He envisions a worldwide movement for vasculitis awareness, inspired by the strong governmental support and public engagement seen in Canada. “I want to replicate that globally,” he stated.
Innovating Patient Care With Technology
Wayne is not just raising awareness of the problem; he’s actively developing solutions. He has conceptualized and is developing an AI-powered app designed to revolutionize patient care. This app would trigger early warning indicators, facilitate communication among multiple medical specialists, and centralize all patient records. He described how this would alleviate immense stress on patients, who often suffer from “brain fog,” by ensuring accurate, up-to-date information is readily available.
Furthermore, the data from the app could provide invaluable resources for global vasculitis research, offering insights currently locked away by the disease’s rarity. “Using the data recorded from the app medical health boards worldwide will have access to reported figures, which will include valuable resource data for the Vasculitis Foundation in their research and studies,” Wayne said.
Despite securing initial funding for the app’s development – an offer he declined based on his independent vision – Wayne remains dedicated to seeing his comprehensive plans come to fruition.
A Mission to Improve Lives
He also passionately advocates for vasculitis patients to receive the same level of dedicated care as cancer patients when undergoing immune suppression treatments. “If we’re prescribed immune suppression, why are we not treated like patients with cancer?” he asked. “Why don’t we have the support and resources available to us that they have?”
Wayne’s hope is to transform understanding, improve care, and ensure that no other patient feels as isolated or misunderstood as he once did. His commitment, inspired by a wish to support others and appreciate the value of life, motivates him in this important but often unnoticed effort.
“If I can help, advise or support one person, one family, if I can encourage, motivate or inspire one person, one business, one foundation,” Wayne explained. “If I can put confidence, reassurance, and belief into one patient and make one person smile, I am successful in my goal. If one person somewhere around the world goes to bed tonight with an awareness of vasculitis, I’m doing what I said I would.”
