Patient: My battle against rare disease

AN IPSWICH leukaemia patient today told of his battle against a skin disease so rare most doctors will never see it.

John Crack, 60, of Davey Close, has been diagnosed with paraneoplastic pemphigus (PNP), thought to affect only two other people in the UK.

It is a non-infectious disease which has caused painful sores in his mouth and lesions on his skin.

Mr Crack, a father of three with 12 grandchildren, is being treated with steroids at Ipswich Hospital but has painfully admitted he thinks he is dying.

He said: “I feel like my life is going and it shouldn't end like this, in discomfort and misery.

“The spots have broken out everywhere now and are itchy and are causing problems like my hair matting to my head.

“Having this on top of the leukaemia has made things twice as worse.”

Mr Crack, who was diagnosed with cancer in 2001, first noticed ulcers on his tongue and the inside of his mouth in December.

The former HGV driver went into hospital in February for a blood transfusion linked to his leukaemia treatment and by that time the sores had spread, particularly round his head and neck.

His wife Maureen said: “The hospital first thought it was MRSA and treated him with antibiotics but the spots didn't go.

“When he came home again nurses were visiting at least twice a day for three weeks to change bandages as the sores on his head and neck kept weeping.

“The spots spread all over his body, under his arms, on his legs and in his groin.

“He was admitted to hospital again on March 23 as they said he could only get the right care there and after four days a dermatologist saw him and said almost immediately he thought it was paraneoplastic pemphigus. It was confirmed six days later.

“Medical students were taken in to see him and told they probably wouldn't see anything like it again.”

Dermatologist Dr Tim Cutler, who made the diagnosis, said it was extremely rare and Dr James Britton, who runs a national dermatology website, said only a handful of people are diagnosed with it in the UK every year.

He said: “It's a condition only a few dermatologists will see in their career, and most GPs will never see it.”

Mrs Crack, who has made a complaint to the hospital that her husband was not seen by a dermatologist earlier, said: “My husband is convinced he is dying and thinks this is a sign of the end.

“We are worried it won't go away as we've read it might not.”

Jan Rowsell, Ipswich Hospital spokeswoman, said: “We did everything we could to make sure Mr Crack was seen as soon as possible by the right medical staff and are doing our best to care for him at what's clearly a difficult time for him and his family.”

Do you have an unusual health story? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN, or e-mail eveningstarletters@eveningstar.co.uk

Paraneoplastic pemphigus

Pemphigus is an incurable autoimmune disease which causes the skin, mouth, nose, throat and genitals to blister.

It occurs when the immune system wrongly views cells as foreign and high numbers of antibodies are produced. They interfere with the cells and cause burn-like lesions or blisters.

The disease is so rare most GPs have never seen it.

Paraneoplastic pemphigus (PNP) is the most serious form of pemphigus, occurring most often in people with cancer.

With PNP painful sores in the mouth, lips and oesophagus are almost always present and skin lesions of different types occur. It can also affect the lungs.

Source: Pemphigus Vulgaris Network support group