A WOMAN described as “kind and beautiful” died from a rare disorder just weeks after a suspected cold.
Alicia Whelan took herself to A&E after weeks of feeling tired.
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She expected to leave that day but was instead admitted with what doctors thought was pneumonia.
The 34-year-old was eventually diagnosed with haemophagocytic lymphohistiocytosis (HLH) – a hyper-inflammatory condition where the body reacts inappropriately to an infection.
Alicia, from Hemel Hempstead, Hertfordshire, was moved to another hospital, where a decision was made to put her into a coma.
A week later, medics ruled there was no brain activity and her life support was turned off.
Her cousin Amelia Troughton-Smith described Alicia as “the life and soul of every room”.
The 27-year-old added: “She was bubbly, funny, and kept us all laughing, even when she was ill.
“She was kind and beautiful, and like a sister to all of us, even though we were cousins.
“[It’s] a totally tragic and quick end to a life I always thought we would have by our sides.”
Alicia, a lettings manager, took herself to Watford General Hospital in October after a sustained period of lethargy.
She thought she would have a quick check-up and be on her way, Amelia said – but she was admitted with suspected pneumonia (inflammation of the lungs, usually caused by an infection).
Doctors prescribed her antibiotics but decided to run more tests when her condition did not improve.
Alicia then discharged herself and moved to Luton and Dunstable University Hospital to be closer to her family.
It was there that she where she was diagnosed with HLH.
According to Great Ormond Street Hospital, the rare immune disorder happens when specialised white blood cells become over-activated, causing severe inflammation and damage to tissues, such as the liver, spleen and bone marrow.
Symptoms include a rash, raised temperature and swollen liver, spleen and lymph glands.
Sufferers may also experience anaemia, infection, bruising, bleeding, seizures, wobbliness and drowsiness.
But HLH can be difficult to diagnose because many of the signs can mimic severe infection or other conditions, GOSH added.
[It’s] a totally tragic and quick end to a life I always thought we would have by our sides
Amelia Troughton-Smith
Doctors told Alicia’s family on November 5 that an induced coma might help her condition, to which they agreed.
She was taken to College Hospital London, in Euston, which specialises in HLH treatment.
But Amelia says nurses discovered days later that the disease had caused her cousin to go into multiple organ failure.
A head scan revealed she was clinically brain dead.
Her life support was turned off on November 12 after her family had said goodbye.
Amelia, a cabin crew worker with British Airways, said: “Our world crumbled. I don’t think my aunt will ever recover from this.
“There was no warning. She was never really ill.
“[She] visited A&E in October due to a cold that wouldn’t budge, feeling lethargic and generally just not right in herself.
“My aunt, she can’t process it. She doesn’t understand how this happened.
“We will try to pick her up as much as we can. She’s trying her best.”
What is haemophagocytic lymphohistiocytosis?
Haemophagocytic lymphohistiocytosis (HLH) is a rare immune disorder where the body reacts inappropriately to a ‘trigger’.
This is usually an infection.
Specialised white blood cells (known as T-cells and macrophages) become over-activated, causing severe inflammation and damage to tissues such as the liver, spleen and bone marrow.
There are two main types: primary (caused by a genetic mutation that is passed from parent to child) and secondary (which develops as a result of another illness).
Symptoms of HLH include:
- A rash
- High temperature
- Swollen liver, spleen and lymph glands
- Anaemia
- Infection
- Bruising
- Bleeding
- Seizures
- Wobbliness
- Drowsiness
However, these are also all signs for other health conditions, so getting diagnosed can be tricky.
HLH requires urgent treatment, usually at a specialist centre.
It is not known how many people have HLH in the UK, but some experts estimate there are 1.2 cases per million children, which corresponds to one in 50,000 births
Source: Great Ormond Street Hospital / Histo UK
In a cruel twist, Alicia’s brother welcomed a baby boy just a week after she died.
She had been looking forward to meeting him as she did not have kids of her own.
Amelia and her brother Jacob Troughton-Smith, 26, a buyer for a construction company, felt useless after the sudden loss of their cousin sister.
The pair, from Luton, Bedfordshire, now want to raise awareness of her disease.
They are running a half marathon in her memory and to raise £3,000 for the charity Histio UK.
Amelia said: “Her passing has had a huge impact on so many and unfortunately we will never heal from the shock of our tragic loss caused by HLH.
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“[Running] is totally out of my comfort zone, but if losing Leesh has taught us anything, it’s that life is too short.
“Push yourselves, chase after your dreams and never take a single day for granted.”
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