A PORT Macquarie family is doing its bit to raise awareness about a rare condition that has already affected three generations.
Hereditary Haemorrhagic Telangiectasia effects about one in 5000 people, but has taken its toll on the Thomson family.
Adam Thomson has it and at least one of his four sons has it. Adam’s father and two of his uncles also had it.
While symptoms vary with each person, a common trait is regular and uncontrollable nose bleeds.
Tomorrow, Port Macquarie Primary School is having an out-of-uniform day to raise awareness about the condition, known as HHT.
“Most people see it as just a nose bleed, but it’s much more than that,” Kelly Thomson said.
“My 11-year-old son Cullen has only just been diagnosed with it – many doctors and specialists cannot even pronounce it let alone treat it.”
One of the peculiarities of HHT is that it can spring up at any stage.
While Cullen already has symptoms, there is every change his three younger brothers could have the condition.
Symptoms can often show up later in life.
“We just want people to know about this condition – there might be other people in the area that suffer from it and struggle,” Mrs Thomson said.
“Our advice to people who think they might have it is to see a doctor or get a second opinion, because we have had trouble finding a doctor that knows about it.”
