‘Why me out of everyone?’ Man suffering from rare disease hopes for transformational research
- Credit: Archant
Gareth Williams of Ipswich remains in constant quarantine from the outside world because of a rare condition that means a common cold could be a death sentence.
Gareth Williams suffers from severe aplastic anaemia and remains in constant quarantine from the outside world because a common cold could be a death sentence.
However, medical charity LifeArc has now teamed up with the Aplastic Anaemia Trust to award a £1.15million research grant to King's College London for a clinical trial in new personalised treatment.
For nearly two years Gareth, aged 49, and his wife Amanda, 47, who cares for him full time, have been living with a disease which only affects 1 in 500,000 people.
The couple, of Kirton, Ipswich, are kept mostly housebound by the debilitating condition which has left him with barely any platelets, white or red blood cells.
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He now has to have blood tests once a week which leaves a permanent dressing on his chest and has chemotherapy which, alongside other painful side effects, has led to hair loss.
"My life is so restricted," he said.
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"I can't go shopping like normal people, I have to go at 11pm when the supermarket is empty with rubber gloves and a mask on.
"My immune system is so low that catching a cold could kill me. I can't go on holiday or go to the pub, I'm in a quarantine."
The first symptoms came about on the morning of Sunday March 18 2018 when he woke up with bruising across his body and burst blood vessels in his eyes and mouth.
Amanda rushed him to the clinic and they knew it was serious when Ipswich Hospital rang them at 2am on Monday April 2 saying he needed to come in as soon as possible because of a major blood abnormality.
Gareth owns a shipping company, M&B (Felixstowe) LTD, but is now unable to go in to the office to work because of the risks the human contact poses.
He had his hopes for recovery dashed in the RACE trial at Kings College Hospital London in June 2018 which attempted to increase his platelet count, but the trial sadly just made him more ill.
This meant he had to have a bone marrow transplant in March this year, from which he is now recovering.
But despite the hardship of travelling down to London every week for treatment and suffering devastating losses in terms of freedom, Gareth has kept his head high.
"He's kept the nurses laughing and he's got them all wrapped around his little finger," said Amanda.
"The NHS has been just amazing, we've seen them at their worst and their best."
Gareth added: "What's the point if you can't still have fun in life.
"But you do get to a stage where you've worked hard and done well and you do just think; why me out of everyone?"`
Dr Catriona Crombie, head of LifeArc's philanthropic fund, said: "LifeArc set up the Philanthropic fund to support translational research into rare diseases, where there is less interest from commercial organisations.
"Patients with Aplastic Anaemia can have limited treatment options; this opportunity with King's College London, King's College Hospital and the Aplastic Anaemia Trust has the potential to transform the lives of patients living with a severe form of the disease."