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The family of one of the longest surviving and most severely affected patients in the world with an extremely rare and life-threatening blood disorder have thanked staff at Worcestershire Royal Hospital for his “life-saving” treatment.

Sean Ludlow, from Evesham, was diagnosed with Paroxysmal Nocturnal Haemoglobinuria (PNH) in 2002 with his symptoms so severe that he was told he would be receiving palliative (end-of-life) care.

However, following a consultation at Worcestershire Royal Hospital, Consultant Haematologist, Dr Salim Shafeek arranged for Sean to take part in a world-first trial for a ground-breaking new type of drug treatment for PNH.

PNH is a very rare disease which destroys red blood cells, creates blood clots, and reduces bone marrow function in patients, as well as causing various other complications. Before this new drug treatment, Sean needed a blood transfusion every few weeks with any minor infection requiring serious treatment.

At the time of his diagnosis, specialist doctors considered Sean to be the most severely affected patient in the country by PNH. But within weeks of starting treatment on the world-first drug trial, Sean’s symptoms began to noticeably improve.

Sean’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 explained: “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.

“Sean had an excellent response to the treatment and continues to receive it today. In my view, he is only alive today because of this treatment. Professor Peter Hillman who is a national expert on PNH agrees with me that Sean was the most severe case of this disease we have ever seen and is now one of the longest-surviving patients in the world with PNH.”

Following the successful international trial, the drug treatment called Eculizumab was eventually approved for wider use both in the UK and around the world. Sean still receives the drug every two weeks via a drip from nurses who come to his home for treatment.

The treatment Sean has received has allowed him to experience his young children grow up into young adults – one of whom has followed in his footsteps in becoming a lorry driver for a living, working for the same company as his father.

Michelle said: “Sean’s life has changed dramatically since this treatment started. From going into hospital every week at one point and needing blood transfusions every few weeks, to going back to work and being active again. 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.”

Dr Shafeek added: “I use Sean’s case to educate new Haematology trainee doctors on this rare condition as part of their qualifying examination and have presented about it at international Haematology meetings. Early detection is important and Sean’s miracle story can hopefully help others in future.”