THE family of a man with a rare blood disorder is making a bid to connect with other sufferers.
Bert Wirth, aged 58, of Abergele, developed Evan’s Syndrome, an auto-immune disease three years ago, but has never met anyone else with the same illness face to face.
His wife Amanda has set up a Facebook group to help raise awareness, and is keen to get in touch with anyone who has experience of the condition, where his natural antibodies begin attacking white and red bloodcells and the platelets which help in clotting.
She said: “You can have all three happen, or just one. Bert is anaemic because it affects his platelets. He has been on lots and lots of medication to try and get his blood count back up. A normal blood count is from 150 to 200. His is from zero to 10.
“You get blood blisters in your mouth, bleeding of the gums, and he bruises quite seriously. A couple of months ago he had a small bleed of the brain and he was rushed to hospital. It is life threatening.”
Amanda said the diagnosis had a huge effect on the family, who have not been on holiday for years because of fears something may go wrong.
She said: “We didn’t really know what it was. All we got told was he had a blood disease, but he wasn’t feeling too well and our GP at the time rang us up and said: ‘you need to go into hospital right away or you will bleed to death’. I thought I was going to lose him.
“We want to set up a support group for him. We don’t even know how many people in the country have this. Of the three we know with it that we know online with it, one died last year, aged just 28.”
Amanda also has ambition to raise funds for research and to support sufferers on holiday, to provide respite for them and their families.
She said: “It weighs heavily on me and my son, Callum, who’s 12 and goes to Emrys ap Iwan. Bert can’t do much. He has got to be careful. We don’t get out a massive amount except to go to hospital.
“It would be good if we can help each other. It’s not just adults who have this. It’s also children.”
nTo get in touch with the Wirth family, email berts-awareness@hotmail.co.uk.