TOXIC IRON ON BRAIN
WHEN Rhys Holmes was just eight years old, he began experiencing constant headaches, sight problems and terrible dizziness. After a trip to his optician who referred him to hospital, doctors discovered a tumour in his brain which needed to be removed urgently.
But two decades on, the 28-yearold’s health has deteriorated again due to a slow bleed on his brain which is thought to have been caused by the initial lifesaving procedure.
He says the bleed has caused iron from the blood to settle on the surface of his brain and other areas of his central nervous system.
“The iron is toxic in these areas and causes various types of nerve damage, and a huge list of symptoms start to appear after the iron has been settled for a number of years,” he said.
“The longer the iron is there, the more the condition progresses.”
Rhys, a keen musician from Newport, said he began to notice a deterioration in his health in 2015 on a team building day out with work, when he began violently shaking.
Later that year Rhys said he woke up in the middle of the night with a loud screeching sound in his right ear and pain in the side of his head.
“Following this I went to see my audiologist who referred me to the doctor as the hearing in my right ear had also significantly deteriorated.
“The hearing continued to worsen up until mid 2016 where I became completely deaf in my right ear.
“By this point I was being seen by a neurologist who carried out various tests, and finally an MRI scan of my head confirming the iron deposits on the surface of my brain.”
In October 2016, Rhys was diagnosed with superficial siderosis, a very rare condition of the central nervous system resulting from chronic iron deposition.
“Since then I have developed many other symptoms including walking difficulties, double vision and loss of taste and smell,” he added.
“The hearing loss itself has caused me great anxiety as I struggle to have a social life and can’t play my guitar any more.”
Neurologist Dr Levy, based in Baltimore, Maryland, is currently spearheading research into the condition.
He is trialling the drug Deferiprone (Ferriprox) in an attempt to remove the iron deposits from the surface of the brain.
“With the doctor in the USA taking a great interest in the condition, I believe his research will give some vital answers to tackling it.
“My neurologist in Cardiff also appears to have taken a great interest in the condition and at the time I believed I was the only person in Wales diagnosed with superficial siderosis.
“Since then I have found one more person but that only makes two of us.
“I’m currently taking Ferriprox to remove the iron from my brain and central nervous system and my blood results has shown that my Ferritin levels – a protein in the blood which binds to iron and is used to measure the amount of iron in the blood – are significantly lower.
“Whether or not the drug is attacking the iron on my brain surface we will only be able to tell through an MRI scan, which I am due to have once a year.”