Life changed by rare disease

A young man has been forced to reconsider his future after being hospitalised by a rare killer disease.

A YOUNG man has described how his life has become a ticking time-bomb after contracting a rare and incurable life-threatening disease.

David Tyzak, 20, from Barnstaple, has been told he has a one-in-five chance of living beyond his 30th birthday after contracting Wegener’s granulomatosis in December.

The autoimmune disease, which affects just 15 people in a million, causes inflammation of the blood vessels and affects the nose, lungs, kidneys and other organs.

David, who dreams of a career in the film industry, nearly died after being admitted to North Devon District Hospital on New Year’s Eve. What he thought was a common cold soon developed life-threatening symptoms.

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He told the Gazette he saw a number of different doctors and was misdiagnosed with the flu, pneumonia, meningitis and tuberculosis, before his symptoms were recognised as Wegener’s.

By this point, he was practically blind and deaf, coughing up blood and running a 40-degree fever. His arms were in such agony he was virtually paralysed.

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David said “The pain in my arms was unbearable, it felt like someone had shattered all my bones right from my shoulders down to my fingers; I couldn’t even move them.

“I was completely delirious; I was convinced I was being chased by Russians.”

David was put on a strong course of steroids and chemotherapy, the only treatment known to force the disease into remission.

But he reacted badly to the medication and advice was sought from the UK’s leading expert on Wegener’s, Cambridge-based Dr David Jayne, as David underwent a life-saving plasma exchange.

He is now out of hospital but receiving treatment at the home he shares with his mum, dad and sister Rebecca.

But the disease has transformed the fun-loving young man, who is now practically house-bound and unable to see much of a future.

He said: “There is an 80 per cent chance that you will only live 10 years once you have the disease as it never leaves you; it could re-emerge at any time.

“If I so much as catch a cold it could be life threatening.”

David’s thoughts of returning to his film studies at Bournemouth University have been put on hold as the severity of the symptoms has left him with complications in his lungs and he is still making frequent trips back to hospital.

But he and his family are determined to help raise awareness of the disease, and give something back to the charity which offered them support.

David’s mother, Barbara Tyzak, said Wegener’s charity Vasculitis UK, as well as the Wilkinson store in Barnstaple where she worked, had both been extremely supportive.

She said: “Vasculitis UK got us through a really tough time; when I was sat by my son’s bedside not knowing if he was going to live or die they were there for me.

“The staff at Wilkinson were so supportive of me, and we are going to be holding several fund-raising events in the store to try and raise money for the charity.

“We want more people to know about this disease, and raise awareness, because if David had waited any longer for diagnosis and treatment it would have been too late.”

For more information about Wegener’s granulomatosis, visit the Vasculitis UK website at

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