The family of one of the longest-surviving and most seriously affected patients in the world have voiced their gratitude for the "life-saving" treatment he received.

Sean Ludlow, from Evesham, diagnosed with a rare and life-threatening blood disorder known as Paroxysmal Nocturnal Haemoglobinuria (PNH), has received a pioneering drug treatment arranged by Worcestershire Royal Hospital.

Before the treatment, Mr Ludlow regularly needed blood transfusion and treatment for minor infections, and was considered as one of the most severely affected by PNH in the UK.

 

 

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Yet, his symptoms significantly improved within weeks of starting treatment on the world-first drug trial.

Speaking about his journey, Mr Ludlow’s wife Michelle said: "Sean had been on a bit of a rollercoaster ride for a few years, but he became very unwell just before going on the trial.

"Within two sessions of the treatment we saw a massive improvement and he soon went back to work again having been off sick for a while.

"From the first or second treatment we never looked back, and I can honestly say it’s saved his life."

Consultant haematologist, Dr Salim Shafeek made arrangements for Mr Ludlow's participation in the international drug trial.

Dr Shafeek said: "I’d heard about an international drug trial for PNH taking place from an ex-colleague, but unfortunately, the trial already had 10 patients and wasn’t accepting any more.

"However, due to how serious Sean’s condition was, I persuaded them to get special permission for him to be added as the 11th and final patient on the trial."

The treatment Mr Ludlow received, which he continues to receive every two weeks, enabled him to return to work.

The drug, Eculizumab, after his successful trail, has been authorised for wider use in the UK and around the world.

Mrs Ludlow added: "The team at Worcestershire Royal Hospital have been so supportive and fantastic throughout and if he ever needs treatment for anything now, I normally insist he goes to Worcester.

"We still see Dr Shafeek regularly for a check-up to see how things are going.

"Dr Shafeek has built up a great relationship with our whole family after 22 years, and he always asks how our sons are doing."

Today, Dr Shafeek uses Mr Ludlow's case to educate new Haematology trainee doctors on the rare condition, and has presented about it at international Haematology meetings.