Turning lifelong conditions into curable ones

A new MRC Centre of Research Excellence (CoRE) is seeking to find a cure for debilitating immune-mediated diseases.

For too long, people have faced such conditions throughout their lives. However, the new MRC Centre of Research Excellence (CoRE), led by the University of Birmingham, aims to transform their lives.

Despite major advances in treatment, there are currently no cures for these conditions, and many people require lifelong therapy to control inflammation and prevent further damage.

Caitlin, now 27, was only 11 years old when she was diagnosed with Juvenile idiopathic arthritis (JIA), a type of immune-mediated disease that can cause excruciating joint pain, and sometimes a skin condition, called psoriasis.

Speaking of the disease, Caitlin said: “My immune system is overactive and with, arthritis, my immune system attacks my joints, which creates the inflammation, swelling and pain. With my psoriasis, it’s more an overproduction of skin cells, which can also be painful and sore.”

Despite first noticing symptoms when she was only nine years old, it took Caitlin two years to be diagnosed with JIA. At the time, Caitlin was advised that it would resolve itself in six weeks. However, the disease spread to her fingers, wrists, knees, toes and ankles. Caitlin and her family had no idea what lay ahead following her diagnosis.

The treatments and their challenges

Caitlin has taken various medications to combat her painful symptoms over the last 16 years. Initial treatment involved intravenous steroids, requiring multiple hospital admissions, followed by further courses of oral steroids. This significantly impacted Caitlin’s sleep, a problem she still experiences today.

She was subsequently prescribed medication that suppresses her immune system to treat her arthritis, which came with a range of side effects including extreme tiredness and nausea. It also prolonged minor colds and illnesses extending recovery to as long as six weeks.

She was moved onto self-injected medication at just 12 to try and reduce the side effects. In the days following this, Caitlin recalls lying on the sofa for hours because she was so exhausted.

Beyond physical pain

The diseases has also affected her mental health. Caitlin was forced to give up beloved hobbies ballet and modern dance as well as playing the piano and violin. At its lowest, her school attendance dropped to just 50%.

Still coming to terms with a complex condition, Caitlin felt different and isolated from her friends and peers at school, unable to relate to typical teenagers.

While many young people’s worries might centre around their social lives, relationships and school, the unpredictability of JIA meant that Caitlin was often more concerned with pain levels or whether she would be able to carry out basic everyday tasks.

JIA is not always visible, and as such, she felt that some adults, teachers and even family members struggled to believe her.

Caitlin later learned that poor mental wellbeing is not uncommon in young people with JIA while studying psychology at university.

Emotional wellbeing was often not talked about during routine appointments where her physical health was the focus. Had she and her family not agreed to participate in a research study that looked at depression, Caitlin’s mental wellbeing may have been overlooked altogether.

“There were times I didn't see a future for myself. I never thought I'd go to university. I don't think my parents even thought I’d go, but here I am.”

Caitlin

Managing her symptoms

Fortunately, Caitlin is now on a treatment that helps manage her symptoms. Her last arthritis flare up struck six years ago. But it’s not been easy. There is a lot of admin associated with chronic illness.

Learning to navigate the healthcare system as an adult and advocating for herself took time. Caitlin had to fight to access this expensive medication that limits her freedom, as it must remain refrigerated.

Caitlin is also more susceptible to infection due to this medication, and she was hospitalised with sepsis last year. Fatigue, aches and pains still impact Caitlin’s life.

Growing up with a condition like JIA has made it difficult for Caitlin to distinguish, as an adult, between typical aches and pains, and symptoms that may indicate something more serious.

She is now focused on improving the evidence base of those living with JIA, and more specifically, the psychological impact of living with an ‘invisible’ condition.

Caitlin is partway through her PhD at the University of Birmingham’s Centre for Evidence and Implementation Science. She is looking at predictors of depression and related behaviours in young people with JIA.

Looking for a cure

Sadly, Caitlin’s experience isn’t unheard of for those living with immune-mediated diseases.

The disease causes the body’s immune system to mistakenly attack healthy tissues including, among many others:

  • joints
  • gut
  • skin
  • eyes
  • liver
  • salivary glands

The resulting inflammation can cause irreversible tissue and organ damage, chronic pain and lifelong disability.

These diseases include:

  • inflammatory arthritis
  • inflammatory bowel disease
  • autoimmune liver disease
  • Sjögren’s disease

All of these diseases can affect children as well as adults and, in most cases, requires life-long medication to control the disease.

There are currently no cures for these conditions.

But that might be about to change with a new Medical Research Council (MRC) investment to establish a Centre of Research Excellence (CoRE).

The team brings together experts from eight universities, including:

  • University of Birmingham
  • Kyoto University
  • Newcastle University
  • University College London
  • University of Bristol
  • University of Cambridge
  • University of Glasgow
  • University of Oxford

They will collaborate alongside charities, public engagement organisations and industry, combining skills and perspectives to improve the lives of patients and train the next generation of researchers.

Our patients and their families are clear, they want more than lifelong treatment, they want the possibility of a cure.

Professor Adam Croft

Director, MRC CoRE in Restorative Immunology

The CoRE will use cutting-edge technologies, focusing on three key steps:

  • understanding what keeps tissues healthy
  • uncovering why inflammation fails to resolves in some people and not others
  • developing new therapies that can restore both the immune system and affected tissues to a healthy, disease-free state

About UKRI

UK Research and Innovation (UKRI) invests taxpayers’ money into groundbreaking research and innovation to improve the lives and livelihoods of people everywhere.

It creates impact locally and around the world, in areas from cancer treatments to clean oceans.

This is the website for UKRI: our seven research councils, Research England and Innovate UK. Let us know if you have feedback or would like to help improve our online products and services.