Living with rare disease, and choosing to fight back

I was first diagnosed with Crohn's disease in 2017 after months of severe symptoms. After a six month wait for a gastroenterology referral and extensive testing, I finally had answers, but also the realisation that this was a lifelong, incurable condition.

Through various medications, I eventually found remission with Adalimumab, a biologic treatment. From 2018 to 2024, I maintained that remission through careful diet management and fortnightly Adalimumab injections. Life wasn't perfect, but it was manageable.

In November 2024, I was diagnosed with Primary Sclerosing Cholangitis (PSC), a rare autoimmune disease that progressively damages the bile ducts in the liver. Initially, doctors suspected cancer. The months of intensive testing and the weight of the diagnosis were overwhelming.

PSC is particularly cruel because there are no treatments. No medications to slow its progression. No cure. The only option is to monitor the disease as it advances and hope to remain eligible for a liver transplant when liver failure occurs. Even then, a transplant isn't a cure. PSC can recur in the transplanted liver.

The stress of this diagnosis triggered my first major Crohn's flare up in six years, breaking the fragile equilibrium I had maintained for so long.

After six years in remission, I didn't recognize the severity of my Crohn's flare up. Neither did the first two doctors. By the time I was admitted to hospital on December 13th, I had lost 15kg in three weeks.

Despite high dose steroids, antibiotics, and a rescue dose of Infliximab, my condition worsened. On December 19th, I underwent emergency surgery, a 7 hour procedure to remove all 1.5 metres of my large intestine and part of my small intestine. Surgeons discovered that parts had turned septic and were poisoning my body.

Doctors later told my wife I wouldn't have survived another 24 to 48 hours.

Post surgery complications led to both my lungs collapsing. I spent three critical days in intensive care on a specialized oxygen ventilator. The oxygen deprivation caused a brain infarction, resulting in temporary paralysis below my waist.

After nearly three weeks in hospital, I was discharged on December 31st, having lost 22 kilograms. I now live with a permanent stoma bag. A significant adjustment, but one that saved my life.

Unlike ulcerative colitis, Crohn's disease affects the entire digestive system, so surgery isn't a cure. I continue managing it through diet, lifestyle adjustments, and immunosuppressant injections.

But it's PSC that keeps me awake at night. There's no treatment plan, no medication regimen, no hope for remission. Just regular monitoring and the knowledge that my liver will fail. The only question is when, I'll need a transplant. And even that isn't guaranteed to be available when I need it.

This is the reality of rare disease. When you're one of only a few thousand patients in the UK, you simply don't matter to pharmaceutical companies. The economics don't work. Research dollars flow to conditions affecting millions, not thousands.

After years of living with these conditions, I realized I had a choice: accept the status quo, or try to change it.

The Loizias Foundation was born from that decision. We fund research into rare diseases like PSC where no treatment options exist. But we also support research into conditions like Crohn's and ulcerative colitis, where an exceptionally high proportion of patients will need major surgery during their lifetime. We can do better.

Beyond research, if talented young people from disadvantaged backgrounds can't access scientific careers, we'll create those pathways. We're building opportunities for the next generation of researchers who might one day find the treatments we desperately need.

And rather than relying solely on ongoing fundraising, we're building an investment portfolio to ensure this work continues for generations, long after I'm gone.

It's important for people to understand that IBD is far more than just "a bad stomach". It's a complex, chronic autoimmune disease that can cause excruciating pain, extreme fatigue, malnutrition, and life-altering complications.

For those who have IBD or suspect they might, my biggest advice is: know the symptoms and seek help immediately. Don't dismiss persistent issues as "just IBS" or "just a stomach bug." If you feel like you're not being heard, push harder for referrals, tests, and treatment. I learned the hard way how dangerous delays can be.

Most importantly, there is light at the end of the tunnel. With modern treatments, lifestyle changes, and support, IBD can often be managed in a way that allows for a near-normal life. You are not alone in this journey.

Every person with a rare disease deserves the same level of research attention as those with more common conditions. Every brilliant young person deserves a chance to pursue science, regardless of their background.

That's what this foundation is about. Not just helping myself, but ensuring that others don't have to face what I've faced alone, with limited options, and little hope for new treatments.

I don't know what the future holds for my health. PSC is unpredictable. Crohn's has its own challenges. But every research grant we fund, every scholarship we award, every young scientist we support, that's a step forward. All we can do is Keep Moving Forward.