Ibrahim’s Story: Raising Awareness of Acute Haemorrhagic Leukoencephalitis (AHLE) told by his family

Reader warning – Ibrahim passed away within six weeks of first becoming unwell. If you wish to speak to someone after reading this story please contact our helpline.

About Ibrahim

Ibrahim is a young father, son, brother and provider whose life changed dramatically when he became critically ill with acute haemorrhagic leukoencephalitis (AHLE) also known as Hurst disease.

Understanding AHLE

AHLE / Hurst disease is an extremely rare and devastating neurological condition. It causes severe inflammation and damage to the brain’s white matter and can progress incredibly quickly. Because the condition is so rare, it can be difficult to recognise and diagnose, and there is still much that is not understood about it.

But behind the medical diagnosis is a real person and a family whose lives have been changed forever.

A Life Full of Responsibility

Ibrahim is a graduate in Accounting and Finance. He was working for a supermarket, building his life and supporting his young family.

He is also a father to two children, both under the age of two.

Tragically, Ibrahim had already experienced an enormous loss. His mother passed away in August 2025. Following her death, Ibrahim became an important source of support for his father and his three sisters. He was not only a son and brother, but someone his family relied upon.

The Sudden Onset of Illness

Then, suddenly, on 29 June, Ibrahim became critically ill. It began with confusion, and he was taken to hospital, where doctors discovered masses in his brain. At first, cancer was suspected, but this was ruled out as no primary source could be found. Infection was then considered, and he was treated with several antibiotics, but fungal infection, meningitis, and TB were all ruled out. After a biopsy and a three-week wait, we were told the diagnosis was AHLE / Hurst disease – something we had never heard of.

A Rapid Deterioration

During this time, Ibrahim’s condition rapidly deteriorated. He went from being confused on admission, to being transferred to the intensive care unit, where he fell into a coma. Despite being fit and healthy with no previous medical problems, he passed away within six weeks of first becoming unwell.

For his family, the speed and severity of his illness has been devastating. A young man who was working, raising his children and supporting his family was suddenly fighting for his life because of a condition that very few people have ever heard of.

Why Awareness Matters

AHLE / Hurst disease is so rare that awareness is extremely limited. Medical literature describes it as a fulminant form of inflammatory demyelinating disease, often associated with very rapid neurological deterioration and a poor prognosis.

This is why Ibrahim’s family wants his story to be heard.

We want people to know that AHLE / Hurst disease exists.

We want to help raise awareness among the public and, importantly, help increase understanding of this devastating condition among healthcare professionals and organisations supporting neurological and rare diseases.

More Than a Diagnosis

For Ibrahim’s children, he is not a medical case or a statistic.

He is their dad.

For his father and three sisters, he is their son and brother.

For his wider family, he is someone deeply loved.

And for everyone who knows him, Ibrahim’s story is a reminder of how quickly life can change.

 

If you would like to speak to our support team about encephalitis, please contact our helpline.

Story published October 2026