Daisy’s family and friends are raising funds to support research into HLH. Daisy 3.jpg

Daisy May Catterall – Dazzler as she was known – died in February from a very rare disease called haemophagocytic lymphohistiocytosis (HLH) where the immune system becomes dangerously overactive. Instead of fighting off illness, it attacks the body’s own organs and tissues. It's a very aggressive disease and requires urgent treatment . Many people affected face long hospital stays, intense medications, uncertain futures or worse. 

Daisy’s mum Rachel explains, “Daisy was just 25 years old when she was taken by this hideous disease. Up until this she was a force of nature, a vivacious fit and healthy young lady who had never been sick and was going to the gym daily and had just run a 10k road race . She had just bought a house with her long-term boyfriend and couldn’t wait to have children. She loved travelling and had seen a lot of the world with her family and boyfriend. Her zest for life was something to behold! She was constantly on the go, never sitting still just enjoying life in each and every way she possibly could. To have that life cut short has been absolutely devastating to her family and friends and a truly remarkable fire has been extinguished far too early.

"Because this disease is so rare, funds are desperately needed for research. The team at UCLH are undertaking extensive research, headed by Dr Jessica Manson, consultant rheumatologist, to better understand HLH and how it can be identified as early as possible and treated. All money raised will go directly to this, and hopefully we can help any future patients in Daisy's position."

Dr Jessica Manson said,

"We set up the HLH Research Group at UCLH/UCL with the ultimate aim of improving outcomes for people diagnosed with HLH. One of the recurring questions asked by both patients and their families is, “why did this happen to me?” We believe that finding the answer to this question is the key to understanding the disease and developing effective treatments.

"Our team of clinicians and scientists work closely together, using our experience of caring for patients with HLH to generate important research questions. These hypotheses are then tested through detailed laboratory and clinical studies, helping us to uncover the mechanisms behind the disease and what goes wrong in the immune system.

"By working in this way, we aim not only to understand why HLH develops, but also to discover new and better therapies that can transform the outlook for patients in the future".

Donate here: Rachel Catterall is fundraising for University College London Hospitals Charity UK